Hello, my name is Melissa G. I’m 24 years old and was born with sickle cell anemia. As a person who’s dealt with great fatigue, pain and discomfort, I’ve always held my head up high through every pain episode as much as possible. Many of the times, people misunderstand where I come from, some including my family. I try not to let that stop me from wanting to move forward. I believe every given day is a chance for something new to be created.
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It’s time to end the silence surrounding sickle cell disease. These stories of challenge, hope, and inspiration do just that.
Imagine hearing “You’ll never be able to have kids.” “You can’t go outside and play.” “You won’t live past 20.” “You’re not normal.” “I can’t help you.” Imagine feeling shattered glass traveling through your blood vessels. Imagine feeling like someone is just twisting your bones carelessly at every joint in your body. Imagine not being able to move for a whole day because your body just won’t let you. Imagine lying in a bed for hours in the worst pain you can think of crying out for help but no one hears you even if you’re in a room full of people. Imagine being in excruciating pain begging for help from doctors but they only think you’re trying to get drugs. Imagine missing out on all of the important things in life because you have a rare blood disease called Sickle Cell Anemia. You’re imagining living the life of Anochia M.
Born and raised in Ruston, LA, I, Anochia M, have struggled with Sickle Cell Anemia for 18 long years. Being born into a family with an older sister who already had the disease, it wasn’t hard for my family to understand what I was going through. My complications with SCD started very early. As a child, I never really understood what it was. I never understood why my parents never let me play with other children, why I could never go outside to play in the sun or snow, or why I was basically confined to the house up until the age of 13.
I would like to raise awareness of Sickle Cell Anemia, not only for the disease but for people who have the disease. I want everybody to know what we go through and how we feel. I want everyone to know what it’s like to be a family member and a friend to someone who has this disease. I want the world to feel our pain. Studies show that in America Sickle Cell Anemia is most common in African Americans. We have HBCUs (Historically Black Colleges and Universities)! Why don’t we have Sickle Cell Anemia support groups at every single college? Why don’t we have sickle cell disease and trait testing available at, or near, every college? We should have more. I used to be the child who didn’t want to be recognized. I didn’t want to be treated differently. I didn’t want people to know why my eyes were green and yellow. I didn’t want friends to know why I couldn’t play outside. I didn’t want people to ask why I wore a mask whenever I came out, and I didn’t want them to know why I would sometimes start crying out the blue. I know I’m not the first person to go through this, and I’m sure I won’t be the last, but I want to be the voice for so many people. I want to be the voice that I didn’t have.
This is my life, Anochia M, a 19-year-old African American female who’s currently a sophomore at Grambling State University! Starting with me, it’s time for a change. Starting with me.
My name is Tyrah H. I am 29 years old and I have Sickle Cell Disease SS. My story is one of hope, determination, and grace. As a child, I lived most of my childhood in a hospital room battling sickle cell pain. I met friends and had school within my little world (hospital). It was going to school, after being absent for months at a time, that became my strange environment. People outside the hospital didn't understand people with sickle cell and what we went through, so the hospital became my comfort place. My parents were always supportive, rotating turns to stay with me so they could keep their jobs. You see my parents really had a tough hit with this disease, because not only did I have it but my brother was born with it too. My parents devoted their lives to taking care of us, encouraging us, and motivating us. They would not allow them to put us on disability, because they did not want us labeled “disabled.” When we were not schooled at the hospital, we were schooled at home by our parents. We excelled in school even though we missed days due to sickness. My brother ended up having a stroke at 12 years old; by that time my parents had another child, a boy who had only the sickle cell trait. The doctors encouraged my parents to look into stem cell and bone marrow transplants. They had harvested cord blood from my baby brother’s umbilical cord. That blood was stored for 4 years before my brother had the stroke. The testing of the blood revealed that he was a perfect match for my brother, but not for me. Therefore, my parents decided to move forward with a bone marrow transplant for him. I was a little unhappy that his blood was not a match for me but I was happy for my brother who had suffered a stroke and was then on a transfusion program. I decided I would focus on my purpose and what my calling in life would be. In high school I developed avascular necrosis in my hip and was on crutches most of high school. I was picked on and talked about. Yet, I was determined to win over my adversities. My brother had a bone marrow transplant and is now living a life free of sickle cell. I discovered my passion by learning to take care of myself. Therefore, I became a nurse to help people with illnesses, especially sickle cell. I am currently a registered nurse working in a sickle cell clinic helping and encouraging people just like me. I recently completed my degree of Nurse Practitioner and will soon test for my license. I want people to know sickle cell is an awful disease and so many young people do not survive the damage it causes the body. However, I decided that I would do all I could do to take good care of myself by focusing on improving my health. This has allowed me to learn from and listen to my symptoms by being proactive, not reactive. This along with God’s grace has given me the opportunity to live my life and minimize my hospital visits. Thank you all for taking on this cause. There are not a lot of successful sickle cell stories, but I can say my parent’s determination helped us to have a good story. Two children with sickle cell disease; one is a nurse and the other is a chef. We are living our best life now! Sickle Cell Disease needs to be shouted out in our communities.
I was 6 years old when I left my country Liberia in West Africa. My parents had no resources to medication, treatment or care and had no idea what sickle cell trait was, let alone sickle cell disease. The war came and things got worse. Ultimately, my parents were told by a doctor that I would not live past the age of 6 due to lack of aid and me constantly being ill. It wasn’t until I came to the United States at age 6 that I was officially diagnosed with sickle cell disease (SS). I have 4 siblings; my 19-year-old brother also has SCD. I am now 24 years old and currently living in Providence, Rhode Island, with my family. I have been hospitalized on a number of occasions due to my chronic disease and also struggle with health complications, but I continue to beat the odds. I struggle with mental health, but I still try to see the positives in my life. I graduated with my BS degree in 2015 and recently graduated with my Masters in Clinical Social Work from Rhode Island College in summer 2018. I am preparing for the LCSW exam and hope to pursue a job in the health care setting and to give back to the sickle cell community. God has brought me this far and for that I am truly grateful and blessed!
I was born in Nigeria and have two siblings. My brother has sickle cell disease and my sister has the trait. My niece and nephew both have sickle cell disease and this is the reason I fight. Sickle cell disease is not my issue, my issue is the treatment we receive as sickle cell patients. I love my life, and I’m grateful for good friends and family, and grateful for my little sickle cell, because my situation could always be worse. Sickle cell disease is not my problem, negative stigma about the disease is the problem. We need to stop the stigma and bring awareness to sickle cell disease. We are only ashamed to tell people we have sickle cell because we do not want to be labeled handicap. We are fully capable of doing our best and accomplishing goals, just sometimes we need the break to deal with our sickle cell. Sickle cell has no plans and people do not understand it. This is what our problem stems from. I am grateful for my little sickle cell, and grateful to still be here making my parents proud. When I was young, other kids’ parents would tell them not to get close because I would die soon. Family members used to tell our parents not to waste any effort on us because we would eventually die. I am grateful that God proved all of them wrong. I have lived my life, and now I am spending my life creating awareness for Sickle Cell. Negative stigma on Sickle cell disease needs to end.
My name is Deniece M. and I'm 34 years old. My first realization of how serious Sickle Cell could be was at the age of 23. I was a junior in college and working a full-time job. I was admitted into the hospital for what I thought was one of my usual pain crises. I was on oxygen and my hemoglobin was very low and I refused a transfusion. My breathing was getting worse and I was eventually moved to ICU. I finally decided to get the transfusion, but by then it was too late. In emergency efforts I was intubated and I had to undergo a blood exchange. I was in ICU and medically intubated for about three and a half weeks. During that time I had a lung biopsy, as well as a chest tube. The biopsy determined that I had BOOP (Bronchiolitis obliterans organizing pneumonia).
Finally, I was extubated and the chest tube was removed. I had to have occupational therapy, as well as physical therapy so that I could learn to walk again. I missed work for a few months and I had to drop out of school. Most people also never talk about the mental aspect. When I came home from the hospital, I was afraid to sleep for fear of not waking up. This whole ordeal taught me so much about myself and this disease. I had to learn to listen to my body and not to stretch myself thin. It took me longer than the average student, but I eventually graduated from college. I have a degree in health services administration and I work in medical coding. This year I joined the executive board of the Sickle Cell Disease Association of America Miami Dade Chapter. Since then, I feel like it has been my mission to help in any way possible to bring awareness to Sickle Cell Anemia. This is just one of my stories. Having this disease is a continuous fight daily.
My name is Basheera F. I was born and raised in Columbus, Ohio, on September 7, 1992. I was diagnosed with Sickle Cell Disease (SCD) at birth. My mother had SCD and my father had the Sickle Cell Trait.
Living with Sickle Cell Disease has caused me to feel as though I live in a world full of boundaries. However, I’ve also felt empowered by the trials I’ve had to endure. I’m greatly affected by the excruciating pain caused by SCD. A time in my life when pain caused the most turmoil was during my years in college at The Ohio State University. I thought college was going to be one of the happiest times of my life, but SCD made it one of the worst times of my life.
I was hospitalized about 7 to 14 days out of every month of the 5 years that I spent in college. There was a time when I was in the hospital for 2 weeks and was told I may die by doctors. There were a couple of other times when I was told I may die. It was difficult to keep up with assignments, do well on quizzes and exams, and to be successful in my classes. I completed many assignments and quizzes while in the hospital. Sometimes I dropped classes because I knew I wouldn’t pass them. Not only was it hard for me to believe in and encourage myself, but some professors didn’t believe in me or encourage me. Some of them advised me to drop their class because they thought I wouldn’t pass. Most of them I proved wrong and there was one who I proved right. Thankfully I was blessed with a disability advisor who advocated for me while I also advocated for myself.
I was struggling socially. I made a few friends through campus bible studies, but it was hard to spend time with them. I was either in the hospital, in class, studying, or just inside hiding from the cold weather to prevent more pain.
OSU’s campus is huge, and it was difficult for me to walk to classes and other places on campus due to pain and low oxygen levels. Fortunately, I was provided with transportation around campus in a van for handicapped and disabled students. Sometimes they were not able to provide me with transportation and I had to walk or take the bus. In cold weather this caused me to have severe pain, which increased my chances of being hospitalized.
Due to faith in God, hard work, determination, discipline, support of family and friends, support of a few professors, and the support of advisors, I graduated from The Ohio State University with a Bachelor of Arts in English in December of 2016. Currently, I’m a Youth Services Specialist at a library in Columbus, Ohio. I create new and execute existing literacy programs for children to increase their literacy skills, reading levels, and to encourage them to read. I still have pain every day, but my hospitalizations have decreased. I have more joy now than I did during college. SCD affects my life, but it does not have authority over my life.
Resentment is an understatement for what I felt when I first found out how exactly people get sickle cell. My third-grade class had to do a project on a disease of our choice, and of course I picked the disease I had, thinking it would make the project easier. Instead, all that came along with this choice was a lot of new knowledge, the most important one being that I got sickle cell from my mother and father. The first thing I told my mom as we drove home from school was “I can’t believe you gave this to me,” as if my parents chose for me to have sickle cell. My mom being a doctor brushed off my accusations, because she knew it was not the case.
This was not my only problem with sickle cell being a genetic disease. Even my developing brain knew that the word genetic related to family. I started thinking of my family, my brother, sister, cousins, aunts, uncles, and grandparents, and realized that I was the only one in the whole family with the actual disease. This realization brought even more resentment towards my family. Thoughts started to enter my head especially during pain episodes or hospital stays, like, Why am I so unlucky? What did I do to deserve this? Why me? How was it fair for me to suffer through the pain that most of my family will never even begin to understand? But they try to. Whenever I am sick, my family from all over the world calls. My brother will keep me on the phone for an hour at a time talking about the most pointless things, just to make my day a little better. My cousins and their parents who live relatively close always come to visit me and distract me when I am feeling down. My mother is always by my side and puts up with my frustrations and anger as I try to get better. Even though they will never exactly know how I am feeling, I am glad that they support me and are always rooting for me.
Over time, the resentment faded as I realized there was nothing anyone could have done to prevent my sickle cell, and there is no one to blame. Sickle cell is a terrible disease, and if it were an option I would get rid of it in an instant, but it has taught me so much about myself, and how to care for myself mentally and physically. I always try to stay optimistic, because I know if I viewed the situation the same way I did when I was 8 years old it would leave me to be a sad person. I have started to take action for sickle cell awareness and have gotten involved in various projects. I made a YouTube channel talking about my experiences and raising awareness. I also recently became a published author, in the Journal of General Internal Medicine, writing about growing up with sickle cell and how I deal with the many different problems I have had with it.
Now I am 18, and it is about 10 years after my third-grade science project. I would like to think that I have a new attitude towards my revelation from that day. I am grateful that I am the only one in my family with the disease. I could not bear seeing anyone else going through what I have been through. Throughout the years I have also learned that sickle cell cannot and will not hold me back from pursuing my interests. If I had kept this mindset, I would have never done things like gymnastics, being an ambassador for my local children’s hospital, traveling to Capitol Hill to speak to senators and congressmen about funding for childhood hospitals and many other things. I most likely wouldn’t even be writing this story today. But I am here, and I am proud of how I got to this point in my life. My future is bright.
Hi, my name is Eric. I’m 18 and have had sickle cell my whole life. I live in this small town called Beaumont, Texas. Having sickle cell isn’t easy. It’s a lot of things you go through that others don’t. A lot of pain, a lot of blood transfusions, and a lot of hospital stays and still to this day it’s not easy, but having sickle cell just makes me stronger knowing that I have to overcome a lot of things and it won’t be easy but you can do it. So whoever is seeing this, I believe because I did it too.
My disease has never been a weakness for me... no limitations. Limitless is what it made me. Sickle Cell has been my greatest teacher... GRATITUDE was the gift. It's the reason I can spend an extra 10 minutes in the driveway in my car listening to my favorite song on the highest volume... and how a single musical note can transcend my soul to a place of ecstasy. Sickle Cell has been my muse… the reason I paint canvases in my brain... colors and patterns singing to me. Beauty exists in all things for me... even in the saddest of moments. Sickle Cell has been my consistent… my rock… It constantly defines why I LIVE the way I live... Why I LOVE the way I love... Why I EXIST... I am Sickle Cell... It is a part of me… It is me... It has made me into my BEST SELF! There is collateral beauty in it all... you just have to want to look for it.
I call it an invisible disease. Most people don’t know I have Sickle Cell until I tell them… and most are shocked when I do. They say, “Really? You don’t look like you have Sickle Cell.” I have always wondered what that meant... As if my disease or every disease should come with a label attached to your forehead. I remember a time when I experienced my worst Sickle Cell Crisis... and was hospitalized for almost 2 weeks... I had severe pain in both my arms and both my legs... to administer pain medication they gave me shots in my thighs... It was 32 to be exact... But what I remember the most about that hospitalization wasn’t the pain… or the shots... or how sweet the nurses were... or how my mom never left my side... It was the doctor who told my mom he thought I was addicted to the pain medication because I kept asking for it... To which my mom responded in true Jackie fashion... “maybe she keeps asking for pain medication because she’s in pain”... So I deemed this disease, my disease... the invisible disease... People don’t see your pain, so they assume it’s not there… Not knowing and understanding that a person with Sickle Cell is probably aching somewhere in their body 90% of the time but they’ve adapted to it... they’ve learned to live with it... they’ve learned to power through... They’ve learned that although they are in pain… they are not easily broken... and in that... they find peace.
My son Andre was diagnosed with Sickle Cell disease at 6 months old. Doctors told me he would not live to see 10. I was 16 years old when I had him, not knowing anything about SCD, but I researched, and did what was needed to take care of him. Today, he is now 31, still here. Sickle Cell is as important as any diseases out here, and more needs to be done. We need to make it happen somehow, and sooner than later!
I was a teenage mom who had a no clue what sickle cell even was, but at 18 I had a son with a trait and a son with sickle cell SS. Scared and ashamed, I felt guilty because my negligence would cause my sons to suffer throughout their lives. A single mom in the suburb hood of Palo Alto, California, I did what I could and what I had to do to provide and survive. My son was in and out of the hospital his whole childhood, which affected his education. At 18 he had a stroke. To get through it, I wrote and illustrated a book.
Hello, my name is Jalisa. I am 26 years old and I have Sickle Cell Disease. I never knew what sickle cell disease was until I remembered and never forgot the pain of a crisis. It has been over 5 years since I was in the hospital because of a crisis which I am extremely thankful for. I have been in the hospital for other reasons such as gallstones which led to me having my gallbladder removed, diverticulitis, and I suffered a miscarriage at 9 weeks recently. Living with Sickle Cell Disease makes me different in many ways because it is a part of me. For me, when I’m sad I feel pain in my joints more frequently. When it’s cold, I bundle up times 10 because just the slightest breeze in the wrong spot can trigger a whole lot of more intense pain. I worry more and over-prepare, but I must be stronger mentally so that my Sickle Cell does not define me. I’ve had to have a tougher exterior because my physical being is less than what it is supposed to be. To me and my body its normal though. I’ve adapted and worked around it before, but now I’m working with it. I have never met another person to this day with SCD. So it makes talking about it hard, because people don’t know what it is. Awareness of SCD is one of my main focuses, and I try to spread the word as much as I can. I would love to share more about my story with other people with Sickle Cell Disease and reach out and talk with others to see how they live with SCD.
Thank you for listening to my story whoever reads this, and I hope some part of this helps somebody suffering with SCD.
My name is Candis St J. and I am 27 years old. I was born and raised in Brooklyn, New York. I am the last of 3 children born to Grenadian and Jamaican parents. Being the youngest, I have always been aware that I have Sickle Cell. My sister has the trait and my brother has SCD as well.
My parents made a point to take me to advocacy meetings and events so that I was educated about my illness and that I was able to see others in various stages of life living and thriving with this disease. One of my greatest childhood experiences was attending Hole in the Wall Gang Camp. I was able to interact with other children who had Sickle Cell. Those were some of the best weeks of my life. I always looked forward to it. Being there made me feel “normal” for a week. I was able to be myself and have fun without having to explain my disease, because, for once, everyone around me already understood.
I’ve had many difficulties living with Sickle Cell. I’ve had countless hospitalizations throughout my childhood and adult life. I’ve endured indescribable pain. I had my first hip replacement in 2007 at 15 years old after graduating from high school. Shortly thereafter, I had my first blood transfusion reaction, which landed me in the pediatric ICU and also resulted in me spending my sweet 16th in the hospital. In 2010, I had another severe transfusion reaction. I had just started nursing school and ended up having to take an entire semester off. In spite of all these setbacks, I still persevered throughout my life. Even though I missed many days of school, I was always an honor student. I remember having my homework delivered to me in the hospital. I try to find joy in all I do and use my trials as fuel to succeed. I eventually graduated with my Bachelor of Science in Nursing and went on to become an ER nurse.
I work hard, play hard, and try to keep a positive attitude, so I can inspire those around me. I have endured physical, mental, and emotional pain throughout my life at the hands of this crippling disease. I have been able to find healing through writing poetry. I am a spoken word artist and have also published a collection of poetry, My Book of Tears. It is through my art that I am able to find release and also share my story and educate others about living with this disease.
Hello, my name is Charisse and I am a 38-year-old woman living with Sickle Cell. I was told that I would not be able to have children because there was such a big risk of something going terribly wrong. I am a mother of 3 and my kids are healthy. I listen to the doctors but also choose to live my life the way I want. I have had a lot of complications with my spleen, gallbladder, and appendix, which have all been removed. I have avascular necrosis of the shoulder, hip, and spine as well.
It was hard being a child with Sickle Cell, especially when I couldn’t do things that other children could do like going outside and playing in the snow or going out in the summer to go swimming. I never even got a chance to go to a water park as a child/teen like my other peers. The risk of going into a crisis was just too great. As an adult I actually have done all the things I couldn’t as a child and more. I try to live each day like it’s my last.
I’ve had complications that were so bad that my doctors thought I wouldn’t live. One time my hematocrit dropped to an 8. Another time my heart stopped. This disease is very serious and can be very depressing at times, but you have to keep going. I always say, I have sickle cell, sickle cell does not have me.
Hey, my name is Laquinta C. I have sickle cell disease SS and I am the only one in my family with this condition. Well, I thought I was the only one until I met my younger sister on my dad’s side and she also has SS. I have been dealing with this my entire life; I got diagnosed at 2 weeks old. I have been told that I was sick a lot in my youth and had to miss out on school. I was also told that I couldn’t have kids because of this condition. Around 10 or 11 is when I realized how serious this was because that’s when I experienced my first crisis that I was old enough to know what it was for myself and not just hearing about it. I remember around age 16 I was hospitalized and was tired of going through the pain and wanted to end my life but never attempted to. I gave my life to God and put my faith in Him, and I believed that I will be healed from this. Years passed and I stopped taking my medicine and didn’t want to take it. That lead to more hospital visits. I finally started blood transfusions for my sake. I found no relief in them, so I stopped them. At that point, all options for me failed and I had lost courage, my self-esteem dropped, and I didn’t want nothing to do with the world again. Around 19 years old I was in college and was going for phlebotomy. Around my clinical time my very first day I was having a crisis and didn’t want to go home.
I tried to push myself through the pain but couldn’t, and once I went home I ended up having to be hospitalized for almost 2 weeks. That led to me not being able to graduate and getting dropped out the class. I was so disappointed in myself, because it felt like every time I put my mind to something and wanted to do it my body would attack me and I wouldn’t accomplish it. At 21 years old, I got pregnant and was told it was a 50-50 chance that either one or neither of us would make it. That was a very scary thing to hear. I prayed every night that we would make it through and that he didn’t have sickle cell. My child’s father had the trait so it made the risk for him even higher than normal, but I still believed God. And I am here to tell you that even though my son has sickle cell, he and I made it through the delivery process and my faith in God has grown even stronger and my son is the best thing that ever happened to me and he was my second accomplishment. My first was graduating high school after I missed my entire 11th grade year, and even though I have sickle cell it is not who I am. It’s simply something I have. Thank you for listening to my story!
I was about 9 years old when I first heard the words SICKLE CELL, but I was much younger when I felt SICKLE CELL. This disease has been with me my whole life and I never understood it as a child. All I knew was the pain. The pain was horrible, unbearable. I can remember being diagnosed with this disease and my mother crying. I cried too, because seeing my mother cry hurt me. I felt fine, but does this disease mean I am dying? Will I die at a young age? What’s going to happen to me? I still had no idea the journey I was about to take. When I was 10, I was admitted to the hospital. I had pneumonia and that threw me into a bad sickle cell crisis. I remember telling my mother that I had seen JESUS! You have to know how that scared my mother and she rushed me to the emergency room. The doctor told my mother that he had to admit me immediately. I was super afraid of being in the hospital. That was my first hospital visit but it certainly would not be my last! I have lost count of the number of times I have been admitted into the hospital. I have had several blood transfusions too. I can tell you one thing though…I am a fighter. I went to Alabama State University where I received a degree in Elementary Education. I also met the love of my life there, and we have three beautiful children together. I am so thankful to GOD for allowing me to live my best life. As an adult, I have pains, but I haven’t been admitted in the hospital in years. My family continues to push me, especially my mother! She will not ever let me use my disability as a crutch! I am a 4th grade teacher, wife, mother, sister, daughter, and friend with SICKLE CELL, and I am living my life like it’s golden.
Being a 29-year-old woman with sickle cell disease has truly changed my perspective on life. The medications, the many blood transfusions, the hospitalizations, and the complications have all become a part of my life, but I never let the disease define who I am as a person. Hi, my name is Tyiesha, and I am addicted to overcoming sickle cell disease.
Sickle cell disease has affected my family from the very beginning. My parent’s first child, my older sister, died at age 2 from complications. She was never diagnosed with the disease, so my parents were unaware of the effects. My mother was actually pregnant with me at my sister’s funeral, and my parents had no idea I would be diagnosed with the very disease that took her life. Being a child with sickle cell disease was a breeze for me. As a child, my father always encouraged me to learn, play, and take risks just as any other child my age would; and I did just that. I participated in numerous physical activities with my younger brothers, and friends with no issues. Growing up, I pushed my limits, and I remember only being hospitalized a few times from pain crisis throughout my childhood.
I know this may sound weird, but I did not realize the seriousness of sickle cell disease until I was older. Like I said before, sickle cell disease did not affect me much as a child. It was not until I was 18 years old when I felt I was not the same as other teenagers. My parents and doctors always explained the severity of the disease, but I kind of thought I was different, maybe even invisible. My family and I moved to Michigan a year before, and I was finally connecting with some of my classmates at my new school. During the summer, I took a trip with them to a water park not knowing walking, overheating, dehydration were things I should have been monitoring. I arrived home that night and feel asleep. Around 2:00 am I woke up with excruciating pain, and I had no idea what was going on. My parents took me to the emergency room, and the doctors actually knew what to do. That night I understood the effects of SCD would be drastic.
From age 18 years old to now, I’ve had 3 traumatic hospitalizations, one leading me to be nonresponsive in the ICU. I still remember my aunt Adriene whispering prayers in my ear, but I was unable to respond to her beautiful words. I can say my hospitalizations have never stopped me from succeeding. I was able to stay gainfully employed while attending college full time; graduate with a bachelor’s in social work; I have a beautiful 4-year-old daughter; and I have a career as a counselor, all while living with SCD. It may have taken longer for me to accomplish these goals, but I still achieved them. I contribute all of my accomplishments to the Most High, my determination despite any obstacles, and family support. My family support is great, and I am grateful for their actions. Hi, my name is Tyiesha, and I am addicted to overcoming sickle cell disease.
My name is Kevenique A. and here is my sickle cell story. There’s so much to tell, I’m not sure where to start. Being born with sickle cell I knew I would face many challenges. My junior year of high school I had 4 sickle cell crises consecutively, leaving me in the hospital for 2 1/2 months. I’d missed out on so much, and the school board told me I would have to repeat the 11th grade and graduate late. This destroyed me, because not only was I doing exceptionally well academically, I was attending high school and college at the same time, with hopes that I would graduate with a high school diploma and an AA degree. Doctors also told me that because the disease would get worse as I got older, which it did, that I should probably not go to a 4-year university, and instead take up a trade. Hearing all of this after I had just started preparing for college was disheartening. My drive and motivation for higher education weakened. With my mom fighting alongside me, once I was released from the hospital, she went to the school board to plead my case. They gave me 1 alternate option which was to be home-schooled. The catch was I had to make all As in order to pass and be promoted to the next grade, and I did. I graduated top of my class with a superintendent diploma of distinction on time with a 4.32 GPA. I was also accepted into Florida Atlantic University where I completed a bachelor’s degree in business management. Although in college I was forced to take 3 medical withdrawals I refused to give up. My sophomore year I was wheelchair bound and couldn't walk because I was diagnosed with necrosis of the hip. I was left handicapped for a while. The second part of that very same year, when I returned to school, I had a blood clot traveling to my heart. In the beginning of what was supposed to be my junior year, I was diagnosed with walking pneumonia. Thus far in college I have had 3 setbacks and watching my friends graduate before me is hard. By facing so many challenges, I gained strength through it all and accomplished a goal that seemed impossible. I realized that as my sickness grows in vigor so will my tenacity. It has only given me the courage to know that any obstacle faced can be a stepping stone. I used this stepping stone to start my own business—a clothing line dedicated to raising awareness about sickle cell anemia and offering aid to medical research.
I am NOT a hypocrite, but I wear a mask. I am not two-faced, but there are two sides of me. I am full of pain and suffering yet filled with peace and joy. Sometimes I feel like my life’s journey is one of contradictions, yet still I walk a path of harmony. From the doctors who diagnosed me with Sickle Cell Anemia shortly after my birth, pronouncing upon me a death sentence, until today at 44 years old, my story reveals that I have been blessed to beat the odds and then some. Born and raised in Montreal, Quebec, Canada, the youngest of three siblings born to Jamaican immigrants, most of my childhood and adolescence was spent in and out of the hospital at least twice a month, battling chronic pain crises, pneumonia, and infections. Low hemoglobin blood counts resulted in me having to receive multiple blood transfusions. As a child, I used to count how many transfusions I had received, but I officially stopped counting after I reached 50. Now I estimate I have had over 200 life-sustaining blood transfusions.
During my time at the children’s hospital, I was privileged to form a special bond with 3 other sickle cell patients around the same age, named John, Keva, and Carolyn. In between respite from the pain, we would laugh, share coping strategies, and compare notes on our hospital stay. Each of them was bright, valiant, and hilariously funny. We formed a connection built from deciphering why we were hand-selected to carry this sickle cell mantle to truly understand what each other was going through. We all did our best to thwart the tug of Sickle Cell as it tried to stifle our hopes and dreams, ravaging our bodies and suffocating us with breathtaking pain. One by one, John, Carolyn, and Keva each succumbed to the symptoms of this disease, and I’m sad to say that out of the four of us, I am the only one still living.
School attendance proved to be a tremendous challenge for me, and I was always playing catch-up on school work in between hospitalizations. My teachers and parents took pity on me, caught between having genuine empathy for me and not quite sure if I was even capable of doing the work assigned. I was always encouraged to do my best, and I internalized that; because of my illness, my best was mediocre. I failed the eighth grade, which further solidified the belief that I just could not cut it educationally. Oddly enough, the only thing I excelled at in school was public speaking. My classmates dubbed me the “Female Martin Luther King,” and I won numerous public speaking awards and represented my high school in a regional competition. Coming from a musical family, I also loved to sing and was fortunate to help form a teenage female gospel group that was widely received and sang throughout Canada and parts of the United States. Singing with the group was cathartic and helped to take my mind off my frequent bouts of pain. I would often beg and plead with doctors to release me from the hospital early so I could join the group for a gig.
Due to my poor academic performance, I barely graduated from high school and subsequently all my college applications were denied. A year after graduation, my persistence in applying for higher education finally paid off when a local community college took a chance on me and gave me a provisional acceptance to their 2-year program. In between hospitalizations and my lackadaisical educational stance, it took me 3 years to obtain my associates degree in social science. Shortly thereafter, my best friend and I decided we wanted to attend school in the United States. We applied and were accepted to a Christian Historically Black College University (HBCU). I received a lot of backlash from family and friends about my decision to leave home, as they thought that I would surely die out there on my own, and that I needed to remain in my mother’s care, so she could look after me for the rest of my life. Despite the resistance, I was determined to proceed. Remarkably, my health improved significantly. I went from being hospitalized twice a month to only having to be admitted once for the entire duration of my college years. Some of those same relatives and friends who stood in opposition to my efforts to leave Canada now say that moving away from the cold climate to the south of the U.S. must’ve done my body good. They insist that I only come back home to visit from now on.
In college, I thought I could continue my academic career with the same laissez-faire mentality that barely carried me through before. However, one professor saw something in me that I could not even see in myself. As he returned my first assignment with a large red D on it, he took me aside, looked me in the eyes and with sincerity said that I could do better than that, and that he knew I was smart and could do the work set before me. I stared at him in disbelief, but his affirmation changed my entire life. No longer did I envision myself as that sickly little girl, but I began to see myself as intelligent and capable of mastering my academic pursuits. With determination and motivation, I put my best foot forward and my grades improved significantly. I made the honor roll and eventually the dean’s list. I graduated cum laude with a bachelor of social work degree and carried this renewed work ethic and sense of purpose with me years later as I completed two masters degrees. I am currently on track to complete a Doctoral degree in Organizational Leadership with an emphasis in behavioral health, summer 2019. In addition, my husband and I have co-authored the book Your Rejection, God’s Protection; A Unique Biblical Approach to Understanding Adversity. The principles in the book have helped many overcome their experience with rejection by empowering them to view it differently and as beneficial to their life’s journey and purpose.
Professionally, as a social worker for over 17 years I have had the distinct privilege to work in tandem with judges, lawyers, physicians, psychologists, teachers, and a host of community partners to help empower and ameliorate the plethora of challenges facing families of abused and neglected children. As an ordained elder within my local church, I have the opportunity to tend to the spiritual needs of the community by sharing a message that gets me through each and every day, one of hope, deliverance, and salvation. As a wife married for 13 years, I am supremely blessed to have a loving and caring husband who understands my illness and picks up the slack when I am sick and incapacitated. As a mother to a delightful 10-year-old girl, I am blessed for she has learned the art of compassion. She hugs me and wipes tears from my eyes when I seethe from the intensity and agony of the pain. I wholeheartedly believe that having a strong support system is critically important to the well-being of anyone living with a chronic illness, and I am fortunate to have such remarkable friends and supportive family members who have encouraged and walked with me on this journey with Sickle Cell.
I do not know what it feels like to go a day without pain. Every day I wake up and say, “Is today going to be a good pain day or a bad pain day?” Either way, I know my day will encompass pain. Every year, with each birthday, I notice that the pain intensifies. I don’t bounce back from sickle cell episodes as quickly as I used to. I am not ashamed of having Sickle Cell Anemia because it has helped to shape the determined and resilient woman that I have become. Despite it all, I am confident that God’s grace has overflowed in my life, and I am ever thankful for His providence and love, and am determined to use the gifts and talents I have been blessed with to encourage others to never give up on their journey.
My sister, Renee T, was born with Sickle Cell Anemia in 1980. At the age of 5 years old she became ill and complained about stomach and joint pain. The pain was so severe that my parents took her to the emergency room. There my mother found out that my sister had a blood disorder by the name of Sickle Cell Anemia. From that point, my mother became educated on this disease while caring for a chronically ill daughter. We learned that both my mother and father were carriers of the Sickle Cell trait. My sister spent the majority of her life in and out of the hospital requiring blood transfusions, catheter, port lines, etc. She missed many days from school, resulting in her being placed in special education classes. At the age of 7 years old her spleen was removed due to being too large (common for those suffering with the disease). Despite the many obstacles she faced, my sister remained strong and looked forward to any opportunity she could spend outside of the hospital. When my sister was first diagnosed with the disease we were told she may not live past the age of 13. Many medical professionals did not understand her diagnosis and many times thought she was "faking" her illness to obtain pain medications. As years went on, more medical professionals became more knowledgeable about the disease.
Throughout my sister's lifetime she endured 7 strokes, with 3 of them resulting in her being placed in rehabilitation services for approximately 3 months or longer. She spent most of her life in pain but lived her life to the fullest. In 2003 she had a son, which we thought would be impossible. At a very young age doctors advised my sister not to have children as it could potentially result in complications to her and the child. Despite that she delivered her son, which was not easy. She spent the majority of the pregnancy in the hospital and he was delivered a month early due to complications. Renee's son, Christopher, is now 15 years old and has the Sickle Cell trait.
At the age of 30 years old, we were told that my sister had some issues with her heart that would require surgery. My sister decided that she was not going to have heart surgery as she was told there was a high chance that she would not survive the procedure. She had endured so much throughout her lifetime; therefore, she would not take the risk, refusing to allow medical professionals to touch her heart. In her own words, she stated, "The doctors have touched every part of my body, they will not touch my heart." Following that my sister spent 9 months in the hospital until she succumbed to the disease on 3/22/2011.
My sister was a fighter and wanted people to know about Sickle Cell Anemia. She lived her life to the fullest, always with a smile no matter how ill she was. She loved her family greatly and wanted nothing but to get out of the hospital to enjoy life. Many times she would be in the hospital 2-3 months at a time, crying to go outdoors and smell the fresh air. Beginning at the age of 20 years old, doctors had a difficult time locating veins, so they would poke her with needles until they found a vein. They would try pic lines, which would become infected. Her greatest asset was having a strong foundation in her family that advocated on her behalf when she was unable to do so. She also learned to be her strongest advocate.
Since her death, I have committed myself to educating the community about Sickle Cell Disease. We hear so much about other diseases but little about a disease that affects so many. In September of this year, I held a Sickle Cell awareness benefit concert in Rochester, New York, for the first time. It was a positive experience that allowed individuals to learn more about the disease. My goal in life is to spread awareness about Sickle Cell Disease and support those impacted by the disease. I would love to continue my work in advocating for those living with the disease on a larger platform. I will not allow the pain and suffering my sister endured for 31 years go in vain.
The year is 2005. Imagine sitting in the same chair for eight hours. An intravenous needle the size of half an iPhone five is inserted into your veins. Now you’re numb. Oh no, another needle. The second needle is connected to a tube that hooks you up to a machine that beeps every half an hour. Just imagine, another person’s blood running through your veins. The doctors try to keep you entertained and make it seem like everything is all sunshine and rainbows. But you know the truth. You seek comfort in the fact that your parents are by your side. The eight hours are up. Now you’re done. It’s time to go home and in the next month, repeat. Don’t worry, you’ll eventually get used to it.
The year is now 2006. You are seven years old and in the hospital. You are there for three weeks, unaware of the current situation. You are playing in the toy room with your favorite dolls and blocks. At one point you try to move, but you can’t. You are frozen in extreme pain. Two minutes go by and suddenly you are being rushed to the emergency room. A stream of tears begins to run from your eyes in the midst of all the commotion, but a feeling of calm and calamity washes over you as you notice your parents walking by your side. They appear hopeful, assuring you that everything will be okay. But you know them. You can sense how worried they are. A couple hours later, you are confused and unsure of what just happened. Little did you know, you have just experienced a sickle cell crisis.
It’s 2017, and you’ve gotten used to the simple transfusions. You feel like no medical procedure can faze you. You’ve arrived at your new campus: THE illustrious Howard University. You receive a call notifying you of your first appointment at the hospital on campus, known for specializing in sickle cell treatment. You assure yourself that everything will go fine. Now imagine sitting in a chair for four hours. The nurse leads you to a small room and inside is a large machine. In a state of confusion, you sit down, take a deep breath, and pray. You learn you are transitioning to an exchange transfusion. A needle (wider than the ones you’re used to) is inserted into the biggest vein on your right arm. It’s being used to withdraw blood from you. A second thick needle is inserted into the biggest vein on your left arm (which by the way isn’t very big); it’s pushing donated blood into your veins. These needles hurt. You wish your parents were with you. As you attempt to relax and lay back, the machine starts beeping. It’s critical you sit still with both needles in both arms… for four hours. You think to yourself “eventually, I’ll get used to it.” No. During your next few appointments, the nurses are determined to convince you that carrying a port inside your body “will make the procedure easier.” You refuse, but they don’t stop. You’re hesitant to make a new change as you haven’t adapted to the current one. On your way home, you assure yourself that God has a plan for you – all of the pain and worry is simply preparing you for your future.
Having sickle cell created a state of dubiety in me. Initially, I became insecure – wondering why God made me different from everyone else. My insecurities turned into sorrow and self-pity as I’ve had to endure a different type of pain that the people around me have never encountered. This led to a period of depression. Nobody knew… not even my parents. However, I never stopped praying and worshipping, desperately waiting for God to heal me… save me. In due time is what He told me. I’m still holding onto this because I know that God will come through. He always does. Over time (specifically during my freshmen year at Howard) I’ve realized that I am blessed – for the simple fact that I overcame. Sickle cell is certainly an inconvenience. Nonetheless, there was something in me determined to make that inconvenience into motivation. And I did.
“Adversity makes you stronger.” This statement has been said and heard all around the world by athletes, motivational leaders, preachers, teachers, and others. Going through a struggle and failing to overcome leads most people to believe that they are weak. Therefore, the mindset that giving up is a necessity is prevalent. This is a widespread problem within our society. People give up effortlessly, without the means to conquer their adversity. They don’t realize that going through a struggle will equip them with the tools necessary for their success.
Having sickle cell anemia has made me mentally fit and ready for the obstacles that are yet to come. It’s been a huge factor in shaping my character. It’s humbled me, but at the same time allowed me to set high standards for myself. Can you imagine? One would think sickle cell is an affliction, but in my case, it’s a blessing – allowing me to realize my worth… my purpose… my value.
“I am a light. Everywhere I go my light shines, and to whomever I speak to my light is transferred. I am a distinctive entity ready to take full advantage of all the beauties the world has to offer.”
-Yours truly, Olaoluwa O.
A few days before my first birthday, I was diagnosed with the most severe type of Sickle Cell Anemia, hemoglobin SS. The reason why I wasn’t diagnosed sooner was because of my traumatic birth. My mother went into labor on New Year’s Day and my parents were anticipating a happy occasion, but it quickly deteriorated into a life-and-death struggle. During my birth, an inexperienced resident was handling my delivery and did not follow proper procedures, which caused me to get stuck in the birth canal and caused oxygen to be cut off to my brain. To get me out quickly, the resident forcefully pulled me out causing the nerves in my spinal cord to be avulsed (ripped) resulting in a brachial plexus injury that left me with partial paralysis of my right arm due to the nerve damage.
As my parents worked through the trauma of their newborn almost dying and being permanently disabled, they spent many days going to different specialists checking for brain damage and taking me to physical therapy. Thankfully, there was no brain damage (however, my older sister would disagree). On my first Christmas, my parents noticed that I was lethargic and barely showed any excitement. They noticed I wasn’t playing with any of my new toys. After a trip to the hospital and several trips to the doctor, my parents found out that I had Sickle Cell Anemia. Initially, they were told that children with Sickle Cell don’t live long and not to expect me to live past my early teenage years.
The remainder of my childhood was characterized by numerous hospitalizations, painful episodes, pneumonia, and lots of missed school. My parents and the rest of my family were, and continue to be, a great support system which made it easier living with two significant physical ailments, Sickle Cell Anemia and a physical disability, two small hurdles in the way of achieving my goals. Their support made college a real possibility.
Despite being hospitalized for complications related to Sickle Cell during college, I was able to excel and graduate with Honors from the University of Cincinnati with my BA. Subsequently, I received a full scholarship to the NKU Salmon P. Chase College of Law, where I received my JD and was a member of the Black Law Student Association and was a Thurgood Marshall Mock Trial quarter finalist. Then, I went on to pass the Ohio Bar, in spite of having a minor Sickle Cell crisis on the last day of the two-and-a-half-day test.
Currently, I am a staff attorney at the fifth largest Catholic hospital system in the United States. There, I serve as the lead attorney for our physician groups in northwest Ohio. This role encompasses hundreds of physicians and midlevel providers at five hospitals and numerous physician offices. As the lead attorney for these regions, I am responsible for leading all legal issues including, but not limited to, contracting, employment/HR issues, federal fraud and abuse compliance issues, and acquisitions. In this position, I have been recognized for playing a pivotal role in leading multi-million-dollar acquisitions. As always, Sickle Cell has played an outsized part in my life for better or worse. During my time as a staff attorney, I have had several Sickle Cell crises that have come up at the worst moments, forcing me to work from home or drive home in pain from business trips.
Yet, I have not let Sickle Cell stop me from being active in the legal field and in the community. I am a current member of the American Health Lawyer Association and just recently completed their leadership development program. Furthermore, I am on the board of the Greater Cincinnati Minority Council Program and was just elected treasurer. In the past, I have served as the chair and the co-chair for S. CELL, a group that advocates for people with Sickle Cell Anemia, while providing community education. And, I have tutored at the Bond Hill Science Academy.
When I was a kid I was obsessed with martial arts because of The Karate Kid and The Ninja Turtles but given my medical conditions my parents never allowed me to participate in martial arts. Now that I am an adult, I have finally taken up martial arts and I currently have an orange belt in Krav Maga, an Israeli martial art. Having Sickle Cell and a partially paralyzed limb has made practicing a martial art challenging; however, I have not let that impede my progress or passion for martial arts.
Last year, I took a major step in my life and married a lovely woman who has been there for me during several Sickle Cell crises. The last major crisis occurred less than a month after our wedding. We were on our honeymoon in Hawaii when my Sickle Cell flared up and ruined much of our honeymoon. However, my new wife was there by my side taking care of me and nursed me back to health. It is a blessing that I married a wonderful woman who, coincidentally, happens to be an ICU nurse.
One of my goals in life is to change the dialogue on Sickle Cell Anemia. For far too long, Sickle Cell has been treated like an out-casted disease by having its research seriously underfunded, by inadequate treatment, by lack of resources, and by patients dying an early preventable death. This is unacceptable. Because of my peculiar journey, I feel like I am uniquely positioned to help change this dialogue and I would love to work with Jordin Sparks and Gen S to make a substantial and lasting change.
Tears roll down my face as I begin to experience one of life’s most undesirable feelings. Pain! Some know this feeling as physical, mental, emotional, financial, and even spiritual pain. There are times when my life and pain seem to coexist. How could one person experience a life of pain and continue to remain? I ask myself this question several times as I sit surrounded by little white rolled tissues filled with insurmountable hurt and pain. Is this life? Is this how I’m supposed to exist? My throat is consumed with hurtful knots of continuously growing pain. I withhold from crying aloud as I muffle the sound with my hand cupped around my mouth. I want to cry out, but I hold the pain in as tears flow down uncontrollably. The pressure builds and builds as I attempt to hold it in. Finally, it is no longer possible. I cry out and it is released. What will I do? How will I get through this? With the help of our heavenly father, I will share my experience of remaining through pain.
My name is Demetris and I am a 37-year-old female. I was diagnosed with Sickle Cell Anemia at a young age. I am the youngest out of 5 children, and my oldest brother and I are the two who were diagnosed with Sickle Cell Anemia and cancer. My brother passed away at the age of 33 and I have always stated I would do the same.
I grew up in a small town in Mississippi and I remember the first time I experienced pain from a Sickle Cell crisis. I was around the age of 7 and was at school when it occurred. My leg started hurting to the point where I could no longer walk. I had to be carried to the office and to the car when my mother arrived. She took me to the hospital and they concluded that I had Sickle Cell Anemia. I did not know at the time that I was about to experience a lifetime of pain.
Throughout my life, I have endured several sickle cell crises which resulted in laser surgery to prevent retinal detachment, blood transfusions, and extended hospital stays. An episode to remember occurred in April, 2010, after Easter Sunday. I was in Mississippi and had a major Sickle Cell crisis following church services. As usual, I attempted to push through the pain, but I had to be rushed to the hospital. It was so severe that they sent me to another state for care. I was very ill and did not know if the baby and I would make it. At 28 weeks, God allowed 1 lb., 10 ounces of an amazing angel into my life. God’s grace and mercy allowed my son to survive and I knew I must remain…even through this pain.
While remaining through the pain of sickle cell, I woke up to a ringing in my right ear a few years later. It started to cause my head to severely hurt and my balance was off. I went to my doctor and he explained that I was experiencing sudden sensorineural hearing loss, and he needed to treat it aggressively. I was completely shocked as he just informed me that I may lose complete hearing in my right ear. The hearing loss was rapidly progressing, and I could not walk without holding on to surrounding items. The doctor prescribed me some medicine to start immediately and was sending me in for more testing.
I went home to start the medicine and I noticed pain in my left knee was beginning. I thought, there is no way a crisis is coming on right now. I placed a heating pad on, took some pain medicine, and began to hydrate. I laid there for a couple of hours and indeed, it was a sickle cell crisis. Within hours, I was unable to walk by myself and the pain was so severe that I had to go to the emergency room. They started me on pain medicine and fluids. I began to vomit, and they administered more medicine. They gave me nausea medicine and released me with instructions to follow up with my doctor. I called my hematologist and she told me to come into her office. I was still unable to walk by myself and the pain was not subsiding. The nurse practitioner walked into the room and immediately said, “Let me go get the doctor.” My hematologist came in the room, took one look at me and turned to the nurse stating, “take her to the treatment room, start an IV to administer pain medicine, admit her to the hospital.” My counts were very low, and she said she could not believe they released me. I knew then it was a big crisis and asked God again to have mercy on me (as a child, my dad often told me to say this when I was in pain).
Everything moved so fast as they started an IV and admitted me into the hospital. I was in pain. They were giving strong medicine, but I was still awake and hurting. I had been awake most of the night in the ER due to continuous pain. They gave me fluids and the doctor came in to state they were putting me on oxygen to help increase my breathing. She explained I was staying overnight, and she would be back tomorrow to see how I was doing. They continued to monitor me throughout the night and the next day, she returned and stated my numbers were still low and they were keeping me on the oxygen and in the hospital. My hearing was almost gone in my right ear and I was having a sickle cell crisis. I was in pain but ready to get out of the hospital and did not want them continuously giving me medicine. I stayed there as they monitored me and the pain slowly subsided. She released me a couple of days afterwards, and I went home to continue resting. As I prayed for healing and restoration, I was better by the end of the week.
We went to church on Sunday and Bishop preached on “The One That Said Thanks.” He explained that we should not sit in our situation but pray for a miracle as your breakthrough is tied to your obedience. I began giving thanks to God and letting him know that I am grateful for all that he does. I gave him praise for making me whole inside and out as I prayed for a miracle in my situation. I knew my sickle cell crisis had ceased but my hearing loss was still present.
I was surrounded by pain. My hair had started falling out as I received chemotherapy weekly and then started radiation daily. I had a major sickle cell crisis and had to be placed in the hospital to receive a blood transfusion. I struggled many days with pain, sadness, and just existing. There are days when joy seems so far away, but I must pray and believe that it will get better. My son definitely brings me joy as I remove my wig and he says, “There you are!” He kisses me on my bald head as he gives me a book to read. I can only smile, read to him, and realize we must enjoy every moment of the day.
On December 10, 2014, I finished radiation. It was a great day! I was done with feeling sad, hurting, and crying because I did not look right. I was done with being sick and done with the pain of having cancer while continuously coping with Sickle Cell. Oh, but God! I had gone through this journey and my life was about to be “normal” again. In actuality, my life would never be normal again. I mentioned earlier that when I turned 33, I thought I would pass away as my brother had. However, I was diagnosed on March 28, 2014, and on March 30, 2014, Bishop’s sermon was “He won’t let it kill you!” This was only the beginning of several messages from God as on the next Sunday, it was “The grace to get through it!”
So, God had given me the grace to get through it and I thought what a year! I guess it was all just a coincidence. Oh, but I was wrong. I was far from being through it. As of December 30, 2014, my life would never be the same. I remember reading a text message at 3:22 pm stating “Jesaiah was running a fever so I gave him some Tylenol. He is sleeping right now.” My reply at 3:24 stated “Ok. Thank you! I’m on my way now.” I pulled up at the daycare and knocked on the door. Jesaiah came to the door and held his hands up for me to pick him up. The daycare worker explained he was still sleepy from the medicine. We went home, and he slept for a while until his dad arrived. We contemplated on taking him to the ER and agreed that we should. They stated he had an upper respiratory infection and sent us home around 5 am. Jesaiah stayed home with his dad and he had been sleeping all day, but his dad informed me that during the last hour he would wake up, scream, and go back to sleep. I knew this was unlike Jesaiah, so I called the on-call pediatrician and explained what was going on. She said to take him back to the emergency room. We got him dressed and headed back.By this time, he was lethargic almost. He would not stand up. When we arrived at the ER, he was just lying in his dad’s arms. They sent us back immediately to complete a CT scan and MRI. On 1/1/2015 at 1 am, the doctor stated, “your son has bacterial meningitis.” At 3 am, the doctor told me they were going to put a breathing tube down Jesaiah’s throat. She also informed me that she wanted to say this one time to get it over with and would only say it once. I will NEVER forget those words. She proceeded to say, “He could die from this.” After placing the tube, she specified they needed to place him in a medically induced coma. The doctor said, “No one could have done anything differently.” I knew then, my baby would never be the same.
On January 11, 2015 at 1:16 pm,the doctor pronounced my 4 ½ year old clinically deceased. What does a mom do? They asked…may we share his joy with someone else? Will you harvest his organs? His father and I asked each other, what would Jesaiah do? We knew… “Hi, I’m Jesaiah, nice to meet you!” must live on. We decided to donate his organs for he was such a happy and loving child. He would speak to everyone he met, hug strangers, and shake hands while introducing himself. He gave love like none other and I’m certain that the people who received his organs are doing the same.
How could I live on after knowing my only child had passed when I thought I was supposed to pass away?I was 33 and I had not died but such a huge part of me did. I made it through the pain of cancer, continuously making it through the pain of sickle cell, and now I must make it through the pain of losing my son.
Before my brother passed away, he told me to always remember Philippians 4:13: “I can do all things through Christ which strengthens (and occasionally stretches) me!” God has great things for each of us and I pray that during your season of stretching, you will trust him not to break you. Continue surviving this life with exceptional testimonies as we never know what will happen tomorrow. Smile, love, and be kind to one another. Pray, forgive, and celebrate life!
I was born at Good Samaritan Hospital in West Islip, New York, in January of 1990. After talking with my mother, she recalls my first crisis before I turned 1. I was severely dehydrated and was running a temperature above 102 degrees Fahrenheit. Growing up I had a normal childhood, with minor crises.
At age 9, I had my first major crisis with Sickle Cell. I experienced a stroke of the left side of my brain, which affected the right side of my body, and two seizures. The following year I experienced a TIA (minor stroke), my doctor advised me to get blood transfusions every 4 to 6 weeks, depending on my blood level, to prevent the problem from reoccurring.
I was in the 5th grade and struggled to reenter a normal existence, but through hard work and determination I was able to return to school and move on to middle school. Although I was put in a smaller class and given extra time on all exams, I excelled and was mainstreamed by the time I hit high school. Although I was still given the extra time needed to complete assignments and exams, through a resource room class instead of lunch, I showed great passion and ambition. Growing up I never heard a lot about sickle cell unless I was talking to my doctors.
At age 14, we moved to Florida where I continued to have transfusions. My crises were almost eliminated. Then, in 2005, I had my first mediport placed in my right chest because of scar tissue on my veins from being stuck twice a month for the past 7 years. In 2006, I had to have my gallbladder removed due to repeat gallstones.
Summer of 2005 and 2006 I was invited to a camp for a week with other children who had sickle cell, Camp Boggy Creek (CBC). CBC was a place of tranquility for children of all ages suffering with a medical condition. CBC gave me an opportunity to be around other children that had the same condition. Being the only person in my family with sickle cell, I felt isolated and alone. CBC let me know that I wasn’t alone, and that sickle cell affects everybody differently.
In 2007, I moved to the metro Atlanta area and graduated from McEachern High School. I was going to Grady Hospital, being seen by their Sickle Cell unit. It wasn’t until I was 21 that I experienced a Sickle Cell stereotype. I had been to the same hospital multiple times in a week and I was labelled a user. The nurse in the ED didn’t want to give me the narcotic pain meds needed because she thought I was an addict. It was then that I realized a change needed to occur. Being 21 I had no clue where, or how, to start the change, but I knew if it was going to happen it had to start with me.
June of 2014, I experienced an intracranial hemorrhage and they stented the blood vessel in my brain. I struggled with my memory and my purpose. I became an active member of my church and that’s when it hit me. I knew what I wanted to do. I wanted to become a nurse and change the perception of people with Sickle Cell all over this country.
Hello, my name is Elaine E. I am 21 years old, a senior in college, and I have sickle cell anemia. I’ll try to write my whole story, hopefully in a way that you could swap shoes with me as you’re reading this.
Sickle Cell Anemia, I realized at the age of 10, was my worst enemy. I was diagnosed as a baby with sickle cell anemia. The full disease, not the trait. It wasn’t until I was about 14 years old that I finally realized that having an IV in my arm almost every other day wasn't normal. Having to get my blood drawn constantly and getting blood transfusions were not normal. Waking up to extreme indescribable pain in the night was also not normal. Lastly, I realized having to see 2 separate doctors way more often than my friends and people around me was not normal.
Earlier I said that the age of 10 was when I realized sickle cell was my worst enemy. Why? I started to have the worst stomach pains ever. That is where my pain crisis always started in my body – in my stomach and my back. These stomach episodes lasted 30-40 minutes. I remember the whole episode. It would start as my stomach cramping then it would turn into excruciating pain and I would have to stay doubled over, I would have to lie down and clench my stomach.
During this time, I would cry my eyes out and beg God, at only 10 years old, to take me from earth and bring me to heaven because I could not do it. It was just too painful. He never took me, but that's what I would say every time I had one of these episodes. After that I would throw up and feel slightly better. This happened constantly. It happened at school, at family events, and neither my parents or my doctors could figure out the issue for 2 years. Then finally my new hematologist finally said it might be my gallbladder that is causing me these stomach crises.
She told me that it had to be removed at some point.
I was only in 7th grade, so hearing that made me so frightened, I was like yeah, sorry, that’s not happening. A few weeks later I had the worst stomach crisis. I could not eat for days. I just laid on the couch with a heating pad on my stomach. My mom forced my dad to bring me to the hospital because she was so nervous. They rushed me to the ER. The doctors took all sorts of tests and an ultrasound. They said I could not leave the hospital until my gallbladder was removed. The ultrasound revealed I had so many stones. That’s what was causing my pain, and my sickle cell turned that pain into a crisis every time I had an episode. Once I found out I couldn't leave the hospital until my gallbladder was removed, I was begging and pleading, saying that I needed to go home and I’ll come back later to do that. I was only 13. I was such a punk. Unfortunately, they weren't going off of my rules. They took my gallbladder out. I missed 3 weeks of school. I had to have 2 blood transfusions, and my mom told me she was so nervous because the surgery was taking way longer than the surgeons expected. It turned out I had over 50 stones in my gallbladder.
The hospital unfortunately became my second home. I spent days, weeks, and even Christmases in the hospital. I had more surgeries. I had pneumonia multiple times, and etc. I missed out on so much because of this disease. I felt like all my life was were labs, x-rays, and surgeries. I remember they made it a song I had to sing in my head to always drink water. Water was my medicine. I was so tired of hearing that. I thought it wasn't fair that I always had to drink so much more water than everyone around me. Yet I would still get sick. I remember being bullied in school.
People kind of knew at my small private school that I had sickle cell. All they really knew was just that I had something, and I had to drink water. I always had a water on my desk when no one else could. I remember one time my teacher told me to keep drinking while she was drinking with me. She said she gets migraines, so she has to drink a lot of water as well. As I was drinking the whole class was yelling, “yeah Elaine!” "Chug, chug, chug” in a laughing way. That was one example. What I got bullied on the most, and still do to this day, is my jaundiced eyes. There's nothing worse than being insecure about something and everyone constantly points it out at you.
My eyes are yellow due to jaundice that comes with this disease. I remember people used to be like “WHOA, what's wrong with her?” “Why are your eyes so yellow?” “Are you okay?” I would hear this all the time. People would ask me if my liver was failing. People told me I look like a cat. People said I looked like a dinosaur. All because of my yellow eyes. To me they were normal. That's what I saw every day in the mirror. Until people pointed it out, then it became my biggest insecurity. It made me cry. I would tell people I had sickle cell, but then in 8th grade to now at the age of 21 only a few people know what sickle cell is. I wish sickle cell was taught about more. Everyone knows what cancer is but when I ask people if they know what sickle cell is they look at me like I have 6 heads.
Having sickle cell and being surrounded in a world where no one really knows what it is makes my life very depressing sometimes. I constantly have to battle with attendance rules and regulations when it comes to school and work. I’m always on the brink of getting fired from jobs because I miss work a lot due to chronic flare-ups from this disease. The fact that people aren't aware of this disease makes people lack sympathy for me when it comes to these rules I have to follow.
Being 21 years old and having a car and other bills to pay for, and constantly getting almost fired from every job because you’re looked at as “unreliable” is really stressful. Having a disease that no one knows about, and looking like an able person, makes people judge me even more. My managers and teachers wouldn't believe me when I said I wasn't feeling well, because I didn't ‘look’ like a sick person. Even my own mother thought I was being dramatic when I really was in so much pain.
I cause myself so many pain crises these days and especially in the past because I wanted to prove that I was strong, and maybe I was being dramatic. Since my mom always shut my pain down, when she had no clue what it felt like. If you don't know, the medical equivalent of a sickle cell pain crisis is the same as breaking a bone.…
I didn't want people to think I was lying. I always felt bad about constantly calling out of work whenever I felt ill. My managers and coworkers used to place bets on me to see if I would come to work. It hurt me because they didn't even realize I already felt bad for missing work constantly. I started to overexert my body. I wanted to prove that my body can’t stop me from anything. I always regret overexerting my body after feeling the aftermath in the ER. Unfortunately, I feel like this is what I have to do since there isn't anyone or any program to help me.
Sickle cell anemia isn’t something to be happy about. This disease is beyond debilitating. It makes you feel constantly fatigued. Your immune system is weak. You’re not allowed to swim or you'll get sick. You can't go in a hot tub. You can’t exercise too hard. You can't be in extreme cold or heat. You can’t play sports with extreme contact like basketball because sickle cell comes with an enlarged spleen that could possibly rupture on impact. You can't drink alcohol when you're of age. You cannot overexert your body. You constantly have to drink water. You never know when you'll have a pain crisis, so it makes it scary to travel. Lastly you can't be scared of needles because they are constantly pricking you at the hospital.
I know I made this sickle cell anemia sound really sad, but, you know what: Sickle cell doesn’t make me… I make myself. Sickle cell anemia made me such a strong person. No matter how many times I was knocked down because of it, I knew it only made me stronger. I know this because God only gives his hardest battles to his strongest soldiers.
I’m also happy that I was bullied because that's where my makeup skills for my soon-to-be lifelong career came from. I started playing around in eyeshadow. I started wearing colored contacts. I was trying to find ways to distract people from the yellowing of my eyes.
Fast forward 8 years since I was bullied about my jaundice and I am now an aspiring makeup artist. I do weddings and photoshoots. I also learned how to do makeup so well on myself from trying to hide my eyes, just for me to realize I unlocked one of my major talents.
From childhood through adulthood there have been many sacrifices, struggles and obstacles living with Sickle Cell Disease. Despite sickle cell affecting my health at times, I've made it clear that pushing forward is my only option. Through my individual experiences with sickle cell I've learned how to navigate through this tough journey.
As a child I learned quick that I was definitely different from other kids. Without having a true understanding of what sickle cell was, (other than I can experience occasional pain) I knew I had to be conscious of the weather and how I dressed, keeping hydrated, not playing beyond what my body could handle, and to rest as often as possible. All were doctor's orders which were followed carelessly as a child due to the lack of education and feeling embarrassed. The only time I felt "normal" was that one week in summer where other kids with sickle cell would go to Camp Carefree in Stokesdale, NC. This is where we would have the most fun, build lifelong friendships, and literally be carefree. The camp since has fallen off from how I used to know it, probably due to funding.
As I became a teen, I experienced more pain and other medical problems from sickle cell. At 16 I had a cholecystectomy due to a buildup of bilirubin that caused painful gallstones. Doctors would tell me it was because I ate a lot of spicy food, but I knew better. After all it was my body and by that age I understood sickle cell, the secondary clinical manifestations, and how it presented in my body. Through high school embarrassment hadn't left yet. When I tried to open up and tell some of my peers about Sickle Cell they would ask silly uneducated questions like, "is it contagious?" or "do your eyes glow in the dark?" From then on, I was completely turned off from bringing awareness to others. Missing many days from school, getting behind on homework, and my jaundice-colored eyes were all things I couldn't hide. Thank God there was a hospital teacher who was that liaison between school and the hospital, who taught material from school and turned in missing or late work so I wouldn't be held back due to unforeseen medical circumstances. The next year, when I was 17, I became gravely ill with a kidney infection and had E. coli in my blood. I was admitted to the ICU for a week and half then was downgraded to the regular hospital floor when my health was more stable. I barely remember anything during that hospital stay as I was so out of it because my temperature was so high it seemed as if my body just shut down on me. All I remember being able to do was open my eyes every now and again. That was the most embarrassing hospital stay in my life. The nurses, my mom, and aunt were the ones who tended to my every need. I couldn't even get out of the bed to urinate or move my bowels, I had to wear an adult diaper. I also remember crying because my arms hurt so bad from not being able to bend them due to the IVs being inserted in the ac space, so when my condition became stable enough to move out of ICU I was given a PICC line. I missed my senior prom during that hospital stay. That was devastating. I learned to push past the disappointment and thanked God for keeping me.
At age 18 I started working at Walmart and a year later I had developed a leg ulcer. This was the most excruciating pain I've ever felt in my life. The pain was so bad doctors once thought I might've had an infection in my bone and would need surgery. Eventually, after I started going to a wound specialist, the ulcer did finally heal. During that time I was in so much pain, unable to walk and go to work. Shortly after I was approved for disability benefits and because those funds weren't enough I ended up in the welfare system as well. That was the most tough and depressing time of my life, but I knew it was nowhere I wanted to remain. Since sickle cell disease is a beast of its own, I vowed to only go to the hospital if it was severe enough. If not then I would care for myself at home. Besides, I don't remember having health insurance so I avoided going to the ER & clinic appointments if need be. For the next few years I sacrificed a lot to finally get off of disability and welfare and become a nurse. Though it was a battle (and continues to be) I became an LPN in February 2012, hoping to make a difference in the lives of others with chronic diseases. Now that I'm an RN, my desire is to work in clinical research specifically involving Sickle Cell Disease and as a neonatal nurse.
My last hospitalization was October 2017. I am now nursing another leg ulcer to heal all while working full time as a mom and nurse and going back to school to further my education.
From being on the medical side having a spinal tap, x-rays, CT scans, surgeries, numerous lab draws and blood transfusions, and of course continuous hospitalizations, to now on the opposite side, I have not let sickle disease limit me or define what my life should be. I'm only 33 and have so much to accomplish. Yes, sickle cell definitely knocks me down for a short time, but to not get back up is not an option. As long as I have breath in my body I'll continue the fight. I have my love bugs looking up to me. And now, more than ever, is the time to become proactive in others awareness of this disease and educating them. Childhood to adulthood, through playing with Barbies, my pregnancies, and pursuing my dreams to becoming a nurse, having this disease definitely has its downs, but looking up, keeping your faith and being optimistic makes the ride a bit smoother.
My hope is that one day while I'm still living and working in the healthcare field, sickle cell will become a widespread topic of discussion and a true cure will be found that doesn't involve a 50/50 percent chance of survival.
I was diagnosed with sickle cell disease at birth. My older brother also has sickle cell and my parents were hoping that I would be born without the disease so I could serve as a bone marrow donor to cure him. I grew up in Brooklyn, a child of immigrants from Togo of modest financial means and limited English language abilities. My parents struggled to navigate the US healthcare system and lacked knowledge about sickle cell. As a result, I didn’t fully understand sickle cell and how it was affecting me for most of my childhood.
Despite being sick frequently, because of lack of education and awareness about my disease, I didn’t know I was different from other kids. In elementary and middle school, I did experience periods of pain crisis and visited the ER three to four times a year. When I was ten years old, I had acute chest syndrome, a complication from sickle cell, and missed about a month and a half of school. Even so, I didn’t understand that I bore a special burden that other kids didn’t have to deal with. I don’t blame my parents. There really wasn’t any education for my mom about the disease and she did not know what to do as a parent to inform and prepare her kids to deal with the challenges that sickle cell brings.
I truly began to realize the magnitude of my situation in high school, and especially in college. The demands of school hit me hard, my stress levels were off the chart, exacerbating my pain crises. Additionally, my mother’s undocumented status made it difficult for her to find work and I had to stretch my limited income to help support her financially throughout my time at NYU. My lack of understanding about my own disease really started to affect me. I was not equipped with the tools to manage stressful situations and the trials of sickle cell. I had a hematologist, but never in our conversations did we talk about what my future would look like with sickle cell. I never heard “This is what is going on with you and why you feel this way.” One of the only conversations I ever had where I talked with my doctor about my future left me discouraged and frustrated.
Due to my own experience with sickle cell, I decided I wanted to pursue a career in medicine and become a hematologist. I was in pre-med classes at NYU and the coursework was very demanding. I was in the hospital frequently. On one visit with my hematologist, we discussed my pre-med track and my doctor actually advised me to abandon my career plans, saying that I needed to think about a realistic career option given my illness. She told me medical school is so stressful and such a time-consuming experience that it would be unwise for me to go through a process like that given my disease. Her words hurt me. I had faced a lot of challenges so far, but this was one of the first times that I was confronted with an obstacle presented by sickle cell that would prevent me from pursuing my dreams. I felt patronized by my doctor and I decided to ignore her. I have fought to pursue a career in medicine and graduated from NYU from the pre-med track with a degree in medical humanities.
I want to work in sickle cell medicine to improve care for patients by bringing empathy and a personal understanding to their struggle. Hematologists who treat sickle cell have expert knowledge and do great work in improving patient lives; however, in my experience, a lack of personal understanding about the disease—specifically about the pain that comes with it—is a barrier to effective treatment. We need to increase awareness and education about sickle cell disease and one of the best ways to do that is hearing from patients themselves.
A lack of knowledge about sickle cell has complicated communicating my needs and limitations to others. When I was in college, I missed many days of classes because I was in the hospital. Some of my professors did not understand how I could be sick all the time and lacked empathy in accommodating me. When I apply to jobs, I face obstacles due to physical limitations of my disease, and I have missed interviews and mandatory training sessions because of being sick, which has prevented me from getting hired. As a recent college graduate, the worry that employers will not understand my situation, and maybe even hold it against me, brings me great anxiety. I am currently unemployed living in one of the most expensive cities in the world. Medically, I am enduring a period of frequent pain crises and have vascular necrosis in my shoulder and both hips. My future is uncertain at the moment, but I remain committed to my goals of becoming a hematologist to improve the lives of people like me.
Increasing awareness and education about sickle cell is essential in not only increasing funding for research about the disease, but also in increasing societal understanding of sickle cell that would help sickle cell patients facing challenges in school, employment, and the health care system. Increased awareness will help children like my former self understand and prepare for a lifelong battle with this disease.
My name is Bryan B. I am a 23-year-old Sickle Cell fighter. As a Sickle Cell fighter, I have experienced many different obstacles good and bad. One real moment that opened my eyes was something I call “2.7 a blessing from Heaven.” This was a year when I was in tremendous pain and real weak, however this was something I figured like all crises I could get through. At the time we really didn’t realize that I was literally not supposed to be walking at all. My parents at the time didn’t really enjoy the service at our local hospital so they took me an hour and a half out to my Sickle Cell specialist. I get out the car in tremendous pain, and weak to the point of passing out and not knowing. However, like the fighter I continue to be, I find the strength to continue and actually walk into the hospital. It’s at this point where I actually don’t remember anything else after I walk into the hospital doors. So as my parents and doctor explained to me after I came to, they said that my hemoglobin was at a “hospital record low of 2.7”. Let’s break that down now. I typically run a hemoglobin of around 7-8, and a normal non-Sickle Cell patient would have a hemoglobin of 13.5 – 17.5. I WALKED into a hospital with a 2.7! My mom said she never knew it was this bad. We all thought it was just a normal Sickle Cell crisis, but she stated that she knew when she saw the two nurses look at each other and barge out of the room and return with more nurses and doctors that something was seriously wrong. After all of this, and after I finally came to 100%, the doctor walks up to me and says, “You are a blessed young man, you were not supposed to be able to walk through these hospital doors with a hemoglobin that low” and from that moment “2.7 a Blessing from Heaven” has stuck with me since! I have also had surgery to remove my gallbladder and spleen due to Sickle Cell.
In 2013 I took the time to create my own non-profit organization in my senior year of high school. It all started with my senior project. I hosted a Red Cross blood drive; however, I could not attend it because I was hospitalized that week for Sickle Cell complications. It was at that point I knew that it was time for me to make a change in the community and start my own non-profit organization “Sickled Life.” Sickled Life is an awareness group seeking to help the world be informed on Sickle Cell. Sickle Cell around the world is not known as much as the other diseases, so Sickled Life was designed to inform and support anybody in need of help. With this inspiration, I have created my own personal website at sickledlife.com. As of 2018, we have hosted 4 VERY SUCCESSFUL Sickle Cell walks locally. Our 5th Sickle Cell walk will take place in September of 2019. I strive to make this my biggest walk ever.
This is only the beginning of our organization. We look to make this a big thing. In the future, we plan on having any type of awareness programs one can think of. From walks, to donations around the local grocery stores, to visiting the Sickled Life patients and helping them, and even having blood drives hosted by Sickled Life around the world. We have Twitter, Facebook, Instagram, and this website. We look forward to making this happen. We cannot do this alone though, so we need you to go out and spread the word about Sickled Life, and our organization. Tell your friends, family, family friends, neighbors, whoever. We just ask that you spread the word in some way. With this story, I hope to inspire all young and old Sickle Cell patients that anything is possible as long as you do not give up on the fight!
My Sickle Cell story began when I was diagnosed with sickle cell at 2 months old. It is a story that has been filled with a great deal of pain and trauma. It is also a story filled with a great deal of faith, love, and, determination to overcome such a misunderstood and often-times overlooked disease that affects so many people. I was diagnosed with Sickle cell at the age of 2 months old. After wrestling with a fever, my mother took me in to the hospital to be seen. That is when she and my father were told that I had sickle cell disease. Doctors told my parents that children with Sickle Cell don’t live very long and that I would probably not make it past the age of 18! As parents, I’m sure it was devastating, to say the least, to hear that type of news. However, my parents, being men and women of God, began to pray and speak life over my life and never believed the report that the doctors told them.
As a child, I can specifically remember growing up with sickle cell and being limited as to what I could do. Other kids would be outside in the snow playing and I couldn’t go, mainly because the weather conditions could cause me to have a painful episode or a sickle cell crisis. Other kids would go on overnight trips with people and I never went. Now I realize it was because people were scared that I would go with them and end up getting sick. I wanted to go ice skating, but I never got the opportunity to go because it was always considered to be too cold for me to do it. My daddy saw to it that I took regular roller-skating lessons every Saturday when I was about 7 years old. It always made me feel special because I had my very own skates and my own skating skirt. I may not have been able to go ice skating, but I was able to go roller skating.
One thing I can remember clearly is that I never wanted to be labeled as different. I wanted to be “normal.” What is normal anyway? Whatever normal was, I knew I didn’t fit the criteria for it!
I used to be ashamed and embarrassed about having sickle cell. I didn’t want anyone to know that I had it. Now I try to educate and advocate for people with sickle cell. I now know that it is nothing to be ashamed of, but I didn’t always feel this way.
When I was 11 years old my family and I moved to Germany. Being a part of a military family, you get used to moving. It was fun getting to live in different parts of the world. Thankfully, we didn’t have to move nearly as much as some other families. However, when we did move we always leaned to adapt and adjust quickly to our new environment. My mother always sought out resources that would help us. She began working for the American Red Cross as a volunteer and then stayed on as the chairperson for them. She soon found out that there was a thing called the exceptional children’s program. They helped children with special needs, whatever they may be. I can remember not wanting to be a part of it. I didn’t want to be labeled as having any special needs because I wanted to be a “normal,” “cool” kid! Hey, I was cute, so I thought at least, but I had something that made me different from any other kid I knew. I mean, it’s not like I had ever met anyone my age with sickle cell.
Germany is where I was when my lifelong journey with fighting the real battle with sickle cell began. Outside of the one crisis that I had when I was 5 years old, my first crisis occurred in Jacksonville, Florida. We were on a family trip. All I know is that I was so excited to be in the swimming pool swimming in my brand new big brown inner tube. Kicking and splashing, splashing and kicking as hard and as fast as I could! I was having a blast! That is until I felt the excruciating pain in my legs. I didn’t understand what was going on at the time and neither did my parents. They knew it had to be serious if I was complaining of pain in the middle of a swimming pool while having the time of my life! They took me to the nearest hospital Emergency Room. All I can remember is them asking me if I felt better or did I need a shot in my butt. I quickly told them I felt better and could go home. We went back to my cousin’s house, where we were staying for the weekend and my mother fed me some chicken with rice soup while I watched Ms. E from the alphabet people. Ms. E said I had to exercise. I don’t remember much else about that trip, but I still remember the intensity of the pain that I felt that day when I was only 5 years old. I had another crisis that was triggered from a swimming pool when I was about 7. When was I going to learn my lesson about the pool? After that I didn’t go swimming unless it was really, really hot outside and the water was a little warmer. Apparently really cold water can trigger a pain crisis and cause severe pain on contact. I wouldn’t experience my first crisis that required admission to a hospital until I was 11 years old, living in Germany. That is when my nightmare began and it went downhill from there. I was admitted to the hospital almost every month. I missed a great deal of school and always had to work twice as hard as everyone else to keep up. My parents were told that I wouldn’t live past the age of 18. I almost died my senior year of high school when I went into a crisis and had the chicken pox as well. My bone marrow shut off for 3 days and no one told us anything. It was so scary finding out that I could have died. I got out of the hospital 2 days before graduation and was able to walk across that stage. I was told all of my life that I would never be able to have children. God has blessed me to live to see 39 years and I have been blessed to have not 1, but 2 children!
Over the years, I have experienced many traumatic experiences due to a lack of understanding of sickle cell by medical professionals. This has caused me to have PTSD. PTSD from hospital trauma is something that many people are not very familiar with, but it does happen. I have been left in excruciating pain for hours at a time due to doctors not believing the pain was as severe as I told them it was. Under-medicating me and not treating the pain in a timely manner has caused additional unnecessary pain and trauma. I have been kicked out of the emergency room because of one doctor not believing that I was in pain just because my hemoglobin was normal. My hematologist teaches that a sickle cell patient’s hemoglobin can be normal and still be having a crisis. There are different types of crises and hemoglobin is not always affected. I want my story to let medical professionals know that it is important to treat sickle cell patients as individuals. Every patient is different. One decision to not treat a patient appropriately could cost us our lives, trauma, or more pain. It is my hope that medical care professionals will become more compassionate and try to understand the pain that we go through. It can be excruciating at times and during those times, we need someone who understands our pain. My journey has not been an easy one, but it is one that I have been able to fight with the love and support of my family. Without them and God, I don’t know where I would be. I continue to persevere. I will never give up.
My name is Debra. I am 29 years old and my life is a sickle cell testimony. When I was a child, I didn’t know too much about it except that my mom kept me in groups and involved in activities with other people who had it. In 1996, I was nominated sickle cell poster child and was featured in newspapers, on tray liners, and on the news. As an adult, I have a clothing line dedicated to bringing awareness to blood disorders and I do Spoken Word about my sickle cell journey.
I have made it my life goal to bring awareness to blood disorders, especially sickle cell. I would appreciate an opportunity to be a part of an organization working to raise awareness for a disease that definitely is not talked about enough. I personally have sickle cell and I want to educate, network, and spread awareness while sharing my ABnOrnal apparel everywhere I can, with everyone I can.
My name is Belinda. I am from Orange, Texas, but I live in Baltimore, Maryland. I am a single mother and a registered nurse. Being a single mother and maintaining a full-time job as a nurse is a job in itself. I conquer this feat daily, all while living with the daily pain of sickle cell anemia. Some days I feel as if I should be the patient as opposed to the nurse.
I was diagnosed with sickle cell at the age of seven. I was a young child screaming in pain when my mother took me to the hospital and was given this diagnosis, which she knew very little about. My uncle, her brother, also lived with this disease but still the family knew little about it.
Once diagnosed, I spent many days of my childhood in the hospital. My cousin Paul, who was a year younger than I was, was also diagnosed with this debilitating disease. He and I would take turns being hospitalized, so much so that the hospital would save adjoining rooms for us and even allowed us to hang our drawings on the walls. Growing up, I spent many birthdays hospitalized. I missed many holidays and important events. I was left out of different things and events that my brothers and peers were taking part in. At the age of 10, I overheard my pediatrician telling my mother that I would not live past the age of 13. This is something I kept to myself for many years.
My mother remarried and moved the family up north to Maryland. I was 13 years old. I survived! I did, however, have to get my gallbladder removed at this age. I was at the time one of the youngest to have this surgery done. I was told I was lucky because I was in the operating room right next to where President Reagan was having surgery. I didn’t feel lucky. I thought, this surgery will be the way I would die. After all, I was 13. I also didn’t like that my classmates now knew I had an illness. They sent a big card to the hospital. I was embarrassed when I went back to school. I was now known as the sickly girl. This and the fact that my uncle, who also had this disease passed away at the age of 36. This caused me to go into depression. One hospitalization, I told my mother “I give up, I’m tired of being sick, I can't do this anymore.” She then taught me my favorite scripture, Philippians 4:13. I can do all things through Christ who strengthens me.
Moving to Maryland was a blessing in disguise. I had fewer hospitalizations and was now given a new life expectancy, 18. Lovely. Also with that I was told I’d never graduate high school, college wouldn't be in the cards for me, and I’d never have children because I was “sick too much.” When I turned 16, my mother made me go to a sickle cell support group, ironically at the same university I later became a nurse at. I am not your typical thinker, so instead of being helped by the counseling I looked around at everyone there and asked the group who was the oldest there. The oldest person was 47. Great, I’ll be dead by 47. Counseling depressed me so I stopped going after two times.
I then began to remember my favorite scripture. I started to rely on my faith in God. This stirred up a determination in me that I still hold on to today. I signed up for a vocational program associated with my school. I would get up two hours early and go to a vocational school every day before going to my regular high school. I got a summer job and paid for a Saturday SAT class. I graduated high school at the top of my class and was accepted to every college I applied to. I passed the age of 18, graduated school and went to college. I CAN do all things through Christ who strengthens me!
College was a struggle. I would get sick and miss days. I got scolded for going to nursing clinicals while I was sick and I’d get scolded for being sick, staying home and not going. I had professors and the dean tell me that nursing would be too much for someone with my illness. I even had one to tell me that I should just stay home and get disability. What should have taken four years took me six years, consultations from my lawyer, many meetings with the dean, the college vice president, and even the college president, but my determination and my Angel would not allow me to quit. I became a baccalaureate-prepared registered nurse May 23, 2010!
At the age of 24, I had my daughter. Throughout my pregnancy I was told that she would be sick. I was told that she would have Downs Syndrome and was asked if I wanted to terminate my pregnancy. Of course I did not. I had no real issues in pregnancy. I developed a blood clot in my 7th month and had to be on blood thinner injections. I was told that I would have a dry and painful birth, but I gave birth to a healthy baby girl and because of the aforementioned, her father and I named her Angel. My mom, the mother of four, was sympathetic when she asked how I was so quiet during labor and I told her I deal with worse pain than childbirth quite regularly.
When Angel was six months old, I took her to Texas to meet my family. She started crawling while playing with my cousin Paul. I was able to grab my camera in time and record her first crawl with my cousin. We stayed two weeks in Texas. A week after I returned to Baltimore, Paul passed away from sickle cell complications at the age of 23. My closest cousin and the only other person who understood my pain was gone. This took a lot out of me, but I knew I now had Angel and she was my reason to keep moving forward. Paul's death instilled in me how short life is and I began to do more fun activities and not just work and study, as I was known to do.
This year, I was able to purchase a home. I have no more student loans, no more car payments, just a mortgage. Sometimes I look back and am amazed at what this “sickly” little girl has accomplished. Day to day living is still a struggle. There’s daily pain, especially when working 12-hour shifts. The simplest thing can cause pain. I get pain from showering. I get pain if I am asleep and my arm or leg comes from under the covers and is exposed to the air in the room. I get pain if the weather is too warm, or too cold, or too rainy. If I don’t get enough sleep, which I never do, there’s pain. If I turn my body too fast or the wrong way I have pain. Sometimes the pain is just an annoying ache, other times it’s as if I’m being repeatedly stabbed. The worst is when it’s in my chest or back rendering me unable to walk or even breathe.
As a nurse, I often have patients suffering from my same illness. They are amazed when I tell them of our common bond. I’ve had quite a few tell me that I give them hope. I have now met a sickle cell patient above the age of 60 and have read about a sickle cell patient reaching 70+ years. I no longer have a doctor-given life expectancy, nor do I want one. I realize I’m here for a reason and will be for as long as I’m meant to be. For now, I’m just looking forward to my next goal to face and accomplish.
My name is Jerry G. I am 21 years old and I have sickle cell beta 0-thalassemia. I have been through pain crisis since birth and at a younger age it was harder on me than it is now. When I was only in the third grade, I had to get a port in my chest because my veins were so done with getting blood drawn every month. I couldn’t be like the other kids because of that. I always wanted to play football, but because I had a port I couldn’t play contact sports. As I got older, I was even denied a job.
With having sickle cell sometimes it can be hard for you as a kid or even now as I’m older. As a kid you know you can’t do as much as other kids. You’re limited, but not too much. When you get older, it’s hard to get jobs sometimes. As I had before said, I was denied a job for having sickle cell. You want to work. You don’t want to rely on others. I was sick one time and I had to call out of work. They didn’t believe me, they even told me to pick an off-day to get sick next time. So, it’s rough.
Hey, my name is LaRaja N. I’m 21 years old. I’m from a little town called Natchitoches, Louisiana. I was born with Sickle Cell because my mother and father had the trait without knowing and they gave the full-blown disease to me. Sometimes I wish they never had me because of the pain I go through. It’s like nothing is working anymore. I get a blood transfusion every two weeks but God told me not to give up, so I won’t. I want to be an inspiration to everybody in the world who has Sickle Cell.
My name is Nicholas S. I’m 24 years old and I have sickle cell (SS). I have been in and out of the hospital for about 4 years now. I’m a photographer and videographer, but sometimes I can’t even work because of the sickle cell, especially when it’s cold. It’s even harder when I go to the ER because my veins are basically all used up. It takes about 45 minutes to even get an IV on me with the ultrasound machine. The nurses love me. I feel like it’s my second home sometimes. Thanks ;)
On the beautiful island of Jamaica, in St. Catherine, a little baby girl cries. The bottle does not soothe her, she does not need a change of diaper, she will not go to sleep, nor does the soothing touch of her mother stop her from crying. She becomes a toddler and is considered to be "spoiled," a fussy child who cries a lot sometimes. She cried so much one day her mother took her to the hospital and said, "She cries so much I don't know what to do, she keeps saying she hurts." They begin running several tests on the child and finally at 3 years old her cries had a diagnosis: sickle cell anemia. That child was me. My parents had no clue what that meant and so now they had to be educated about it. I was referred to the only sickle cell clinic in Jamaica, in Kingston. Throughout the years I had numerous sickle cell crises, which meant I was in too much pain to be treated at home. So, I was frequently hospitalized. Sickle cell impeded my life as I learned what not to do to prevent having crises. However, it was inevitable that I could not stop crises from happening every time. I learned that extreme weather changes, like simply playing in the warm sand then running into the cool beach gave me an instant crisis. I have learned that being too exhausted, stressed, doing strenuous activities, or having any type of virus like a cold could land me in the hospital. I was told my lifespan would be short. I have met people like me who I became friends with and they died at a young age because of sickle cell. I grew up watching my four siblings being able to play, do sports, and never becoming sick, so I was a very quiet and reserved person. My siblings did not have the disease. They were only carriers, having just the trait, so they lived normal lives. I used to question why me, but my mother would say "because you are the strongest." I grew to believe those words and they became my comfort. I grew to accept my sickle cell and was happy I only struggled with that one issue. Three times in my life I was told I'm not going to make it. I am susceptible to pneumonia, and it would have me in dire circumstances. I have had acute chest syndrome twice, which rendered me helpless and unconscious with a collapsed lung. I have had sepsis, which took me to the point of no return, but I have fought through it. Once I met the man of my dreams and he wanted to marry me. He told me we needed to live somewhere I could receive the best care for my illness. At that point I was living in New York, which in the late 90s knew nothing about sickle cell anemia or how to treat me. So, after research we moved to Georgia, where I became a patient of Grady's Sickle Cell Center in 2006. By 2007, I started to realize sickle cell can cause several issues that can and do become permanent. I had to quit several jobs because of always being sick. I had to put a pause on higher education because I kept getting sick. However, I keep fighting the odds, I was still alive and getting older despite others around me dying from the disease. Currently I have developed avascular necrosis (AVN), which sums up to death of the bones. My blood circulation is poor and different areas of my body are deprived of blood supply so the bones in those areas have begun to deteriorate. Therefore, I have been diagnosed with osteoarthritis as well. I also have type II diabetes. I am a permanent member of Benchmark for physical therapy. I have a bad lower back, ankles, knees, wrists. I have done 2 humeral head replacements, which means I replaced the bones in my shoulders with prosthetics and metal. My last surgery was in January of this year, and my recovery time for each shoulder is 18 months. I was told I will possibly have 67% of mobility, and that there will always be pain, especially when it rains or it's cold. This is caused by AVN. I now have impending hip replacements for the same reason. I have developed insomnia over the years because I am always in pain and cannot comfortably sleep on my side, which was once my favorite sleeping position. I often have numbness and tingling especially while at rest. I cannot do regular exercise. If I go for a walk I might as well walk until I get to the hospital because a crisis is going to happen. I have had a total of 9 surgeries, 5 of them directly related to being born with sickle cell anemia. However, when you see me you would never think I struggle as much as I do. I do not look like the typical sickle cell patient, I always look well, and I attribute that to a devoted God and my positive outlook on life regardless of my struggles. I am currently a grad student, which was a long time coming. I am an intern as a clinical mental health counselor. In watching how sickle cell disease has caused many patients to suffer with depression and substance abuse, I was motivated to become a counselor. Years ago, I was a motivational speaker for sickle cell patients because I knew their struggles. I decided I had to advocate for myself and for them, and since I have many physical limitations I could not have thought of a better way to help others to live what is considered a normal life. My personal goal is to live a normal life as much as possible and to not worry about my situation but to work around it. I have been advised by physicians and my family to slow down, but I decided, no, I want to do as much as I can until I can't. I currently work full time, I am a full-time student, I am a wife, and I have 2 beautiful children I was told not to have, but God blessed me nonetheless, though it was so difficult. At the age of 12, 20, and 26 I was told my time was up, but now I am 37 years old and alive to serve my purpose and prove that with a positive thought, affirmations, determination, and the right type of support a lot of things are possible. Do not waste your time worrying about your illness, but instead focus on living. Do what you can today and rejoice when tomorrow comes. I have failed many times and had to choose different routes along the way, but I am proof that life is what you make it. Be in control of your destiny.
My fight and journey with Sickle Cell Anemia SS has been tough. But it has taught me a lot. Which is to live my life to the fullest. I have two college degrees. There's no expiration date stamped on my body. Through my 39-year journey in life, Sickle Cell has brought me through many trials and tests, epilepsy, skin cancer, stroke, and a heart attack. But at the end of the day I still manage to smile. My goal in life is to encourage others who battle this disease.
I will always be an advocate for adults with Sickle Cell Anemia until there is better treatment and awareness about this disease. Because the moment you turn 18 there is little to no compassion or care for adults; we are left in the cold. Many of us are labeled as drug seekers. There’s not many outlets available to us . Little to no support groups are available. Admission is often difficult. During our hospital stays, we are discharged far too early, due to hospital policies.
My name is Datesha R., I am 24 years old and I have sickle cell disease SS . I have suffered with many complications as a result of my sickle cell, including a stroke at the age of 7, which caused me to have to learn how to walk again. I lost my vision in my left eye when I was in high school due to a medication. I continuously undergo exchange blood transfusions every four weeks, and this is only half of the complications that I have experienced with sickle cell. I am an aspiring counselor, motivational speaker, and author. I have plans to start my own non-profit to help others who suffer with this disease so I can let others know that you are bigger than your disease. My favorite quote will always be, “I have sickle cell, sickle cell doesn’t have me.”
This story is just a very rare, candid expression of my feelings, but I hope something in here touches someone.
Having sickle cell (SC) is truly hell – it’s truly one hell of a disease. To say the pain is excruciating is a gross understatement. Growing up, I didn’t know how to handle the fact that I had it, so most of the time I would just pretend I didn’t. At doctor’s appointments I let my mom do all the talking. In elementary school, when it was too cold for me to go outside for recess, I played inside by myself and told my friends it was because I just wanted to play by myself. When I had to sit out of certain exercises in gym class so I wouldn’t overexert myself, the other kids thought I was getting special treatment. When I was out sick for long periods of time, I blamed it on things I thought they could understand like the flu. When I couldn’t get in the pool at birthday parties, I just claimed I didn’t want my hair to get wet. On the one hand, I wanted to explain the truth so I could have at least one friend who understood. But on the other hand I never wanted my peers to look at me differently or feel sorry for me.
Since childhood, I have been told what I could not do, what my body could not handle, and how I should temper my goals because of sickle cell. Thankfully, my parents did not feed into limiting beliefs and taught me to try and do the same. It was not easy. There was always tension because while my parents wanted me to feel normal, it broke their hearts to see me in pain, so they did whatever they could to avoid that fate for me. Sometimes they held the reigns too tightly and there were times when I had to learn my own lessons. For example, they let me play soccer for years as long as I communicated with the coach when I needed to rest and drink water, etc. I got sick a few times, but this was the first activity that helped me learn how to manage living with sickle cell – how to face the disease, take care of my body to avoid crises, and get back up after it knocked me down.
My most recent sickle cell crisis in October, 2018 was one of the most severe I’ve had in a long time. Each crisis feels like a concerted effort to take me out. And afterwards, bouncing back is a physical and mental struggle because after I’ve finally gotten to a good point with my health, it’s like starting over. Although the medical issues are out of my control, what I refuse to let sickle cell take from me is my mind. I refuse to use this disease as an excuse to accept anything less than excellence from myself in every situation. This is what fuels me to succeed academically, professionally, and socially. I have been able to experience blessings that probably would escape me if I let fear have its way. I am in my final year of law school, at the top of my class, with my dream job lined up and none of it would have happened without prayer and perseverance.
You never know when a crisis will hit, so I’m constantly living with that fear hanging over my head while also trying to fight that fear and live freely and fully. Emotionally, I am always stuck somewhere between determination and frustration – between wanting to rebel against sickle cell but having to succumb. The constant flux and the certain uncertainty that comes with the disease are taxing. Although I can’t even explain or express them all, I sometimes feel so many different things at the same time that I feel like I’m just going through the motions and want it all to stop. But I can’t stop, so I keep going. I keep distracting myself with reasons to keep going. I keep living in defiance of this disease, while being conscious of its power.
In 2014, I met a girl with sickle cell through volunteering with the Sickle Cell Association of New Jersey. She was my first friend with sickle cell disease and we had so much in common even outside of sickle cell, including being part of the same sorority. I had never been able to talk to someone who understood me like she did and she was the most positive person I’ve ever met. I wish I was as strong as she was and that we had more time together. She was very vocal and public about her sickle cell journey – her struggles and her victories – and she encouraged everyone to live life to the fullest regardless of their pain. She passed away from complications after a bone marrow transplant that was ideally going to heal her. Losing her still hurts and I don’t have any friends right now with sickle cell, so I feel incredibly alone sometimes. It’s an interesting feeling, though, because the only people who truly understand what I go through are the same people who are a constant reminder of the disease – the thing I hate the most. So, I’m constantly back and forth between wanting to be connected and feeling the need to separate myself.
Having sickle cell taught me that I cannot control the challenges life throws at me, but what matters is how I respond. I must contend with the physical and psychological trials of this disease every single day, but I choose to seize the power of overcoming and not falling victim to it. For a long time, I used to think, “Why me? Why did I have to be born with this awful disease?” Finally, I began asking that question from a different perspective: “Why me? God must have a reason. How can I use this to make a difference somehow?” I recognized that sickle cell is bigger than me. I decided to take action by volunteering with my local sickle cell organization, advocating by meeting with legislators on Capitol Hill, being a keynote speaker at events, serving on a research advisory board, and being on panels at medical conferences. The feeling of being able to help others with my story and service was overwhelming. I really miss being a part of that organization since I moved to Maryland, but I recently found an organization in this area and look forward to connecting with the local sickle cell community.
God gave me a personality of wanting to control everything, but also allowed me to have this condition that reminds me I can’t. I don’t like to think that I am or have been depressed because it’s a tough truth to realize, but everyone has valleys in life. Still, I won’t sugarcoat it – I often need to lie to myself and to the world about how happy I am so that I don’t sink into the reality of my feelings. Then I feel guilty for feeling so down when I know there are so many people in the world worse off. So, I force myself to crawl out of those low points and toward whatever I want my truth to be because I know God has a purpose for my life. That’s the message I really want to get across – yes, sickle cell is the thing I hate the most and, yes, the trials are ugly, but I am blessed. I have sickle cell, but it doesn’t have me!
Thank you for taking the time to read my story. I hope it helps bring more understanding about the depths of sickle cell, and serves as a reminder that no matter what life hands us, we were all born with value and purpose and should stay encouraged.
First, I want to thank you for this opportunity to educate and bring awareness to a disease that has been a part of my family for as long as I can remember. There are still too many people who ask, “What is Sickle Cell?”
My journey with what is known as Sickle Cell Disease, often referred to as Sickle Cell Anemia, began when I was much too young to grasp the complexity of the disease. My favorite first cousin, Ross, was always in the hospital during my childhood. My mom would say, “Ross is in the hospital with a Sickle Cell spell, we need to get up there.” Off we would go, often finding my cousin in high spirits, laughing, giving me a hard time, while other visits he would be lethargic. Although the visits included laughter, he was sick then too. It’s important to the story that you know my maternal family roots are in the northwest area of Arkansas, where, until recently, minorities were few, especially during the 1970’s and 1980’s. For a doctor to see a patient with Sickle Cell Disease was rare.
In 1991, I gave birth to a beautiful baby boy, weighing in at 10 pounds 5 ounces. He was perfect. My cousin Ross was in the hospital with a Sickle Cell pain crisis when I went into labor. He heard that I was having trouble and that the doctors wanted me to walk. He got out of his bed and came down and walked with me, me moaning through contractions and him stoically hiding his pain cradling his I.V. pole. The irony in this moment is that two weeks after my son Shaquille’s birth, I received a phone call from the pediatrician. Shaquille’s PKU (newborn screening) test results were in, and he had Sickle Cell Anemia. In that moment, everything stopped. The doctor continued to talk, and I remember him saying that Sickle Cell screening in Arkansas is done on all African American babies and they would do follow-up blood work. He said there was no need for me to get excited yet because it would be best to test again when Shaquille turned 8 months old. Don’t be hysterical? I was a new mom, but, unfortunately, I was not new to Sickle Cell. I witnessed on a regular basis what my cousin went through and the emotional toll it took on my aunt and his siblings. I did not want this for my child. I hung up praying that this was a misdiagnosis. When Shaquille turned 8 months old, we were sent to the Arkansas Children’s Hospital in Little Rock. His diagnosis was confirmed. The nurses and doctors were so caring as they explained to us what this would mean. I did not want sympathy, but, to be honest, I had dropped out of college due to my pregnancy. Now, my boyfriend, who was still in school, and I were going to raise a baby with a chronic illness on minimum wage. We were scared.
It was during the time that Shaquille’s Sickle Cell diagnosis was confirmed that my cousin Ross died from complications of his Sickle Cell at the young age of 27 years. I remember a family member asking the doctor (emotions were high), “What do you know about Sickle Cell?” He looked at all the confused, hurt, sad faces standing outside of Ross’s hospital room and said, “I’ve read some things in a book.” Then we hear “Code Blue,” and Ross was gone. The person that had been entrusted to care for him had just told the family, “I’ve read some things in a book.” We were insulted. My cousin said, “I’ve read about it, but doesn’t mean I can treat it.”
During this period, I was emotionally exhausted. I had just lost someone precious to me. Was this my son’s future? I prayed, but only selfish prayers in the beginning. Thank God there were others praying for us, for my strength, understanding, and patience.
When Shaquille cried as an infant, I did not know if it was due to colic, hunger, dirty diaper, or because he was in pain. There were times when we would pick him up and he would let out this horrifying squeal. Was he gassy, constipated, or was he having a pain crisis but could not voice it? The tough part during the early years was not knowing. While in Little Rock, he was prescribed penicillin to prevent certain infections like pneumonia. He was on daily penicillin from infancy to five years old. However, Shaquille frequently had pneumonia as a child and blood infections. I just want to highlight a portion of the journey with hopes that I can share his story with the world.
Although we had been hospitalized with pneumonia and pain crises over the years, we experienced our first “Sickle Cell emergency” in May of 1996. We had spent the morning celebrating Shaquille’s kindergarten graduation. After the ceremony, the kids remained at school to have a day of fun and we returned to work. Around one o’clock that afternoon, I received a frantic call from the teacher saying that she was not sure what is wrong with him. She assured me that he hadn’t hit his head, but that they could not get him up. I rushed to the school and got him in the car. Since we live in what would be considered a small city, I got him to the hospital within 10 minutes. Initial diagnosis, parvo. By the second day, his hematocrit was dropping, and they are not sure why. By the third day, the doctor tells us that he needs blood because his bone marrow completely shut down and he was not making new red blood cells. His body was backing up with fluids; so, during the transfusion his lungs fill and he codes. He was airlifted to the Arkansas Children’s Hospital by Angel Flight One. They saved his life.
At age nine, his spleen was removed due to enlargement and fear of it bursting.
At age 17, he was misdiagnosed with strep throat, so, when we got him to the hospital and diagnosed him with bacterial meningitis, his kidneys were shutting down. After two weeks in the hospital (quarantine), he was released with home health for an additional month.
At the age of 24 he was diagnosed with acute chest syndrome in October of 2015 and two months later, December 30, 2015, passed away from complications, but my journey doesn't end here. My brother’s 28-year-old daughter, Ciara, who shares a birthday with my son, also suffers with Sickle Cell Disease.
My niece is a mother of two beautiful children. It’s a struggle for her to be the mom that she wants to be as she averages 1-2 hospital stays per month. After losing Shaquille it was hard for me at first to go visit her during these times, but I know how mentally taxing this disease can be. He would want me there for her. Last month while she was in the hospital, her babies called to tell her goodnight, she cried for over 30 minutes after they hung up.
My son was one of the largest Sickle Cell patients at the ACH. He was a big, healthy looking young man. People would tell me, that big ole boy, he doesn’t look sick. Well, he was, but his dad and I never let him use it as an excuse for anything. He played football when he could. He was in the FFA. He socialized. He got his first job at 16. He did not want anyone to ever feel sorry for him.
In 2018 it is so disheartening that people still ask, “What is Sickle Cell? I’ve heard of it, but I don't really know what it is.” When they say that to me, I love it and welcome it. I love the opportunity to educate people about the disease that my cousin, my son, and many others succumbed to.
Again, thank you for allowing me to share a portion of my Sickle Cell journey. What you all are doing is AWESOME! I have been trying to get a fundraiser started in my area. So, maybe your campaign will kickstart so much more!
Shaquille N 4/11/91-12/30-2015 😊
Your mind is not designed to comprehend the bind. Still, I entertain your curiosity and try to explain it sometimes. Take a glass, break it up and give it a good grind. Put it in a needle and shoot it through your veins. Now the glass is moving, how’s that for pain? It’s slicing me up from the inside out, still I don't let out a yell, a scream, or a shout. The glass travels around, exposing tissue inside, but you think I'm okay just because I don't cry...
I was born with sickle cell disease. All my life I was in and out of the hospital for 19 years. In 5th grade I went on a class trip to Prescott, Arizona. I had to get air evacuated to Phoenix because I collapsed and my spleen was breaking open because it was enlarged. I was in ICU for about a week. I’ve been in and out of the hospital since I was 21 days old. Starting taking opioids at age two to ease the pain. Once, I was hospitalized due to flu, pneumonia, plus a sickle cell crisis.
We are twin brothers with Sickle Cell SS. We didn't find this out until we were about 8 years old. There was so much going on at the time we found out. Our mom was trying to care for her ill parents and not knowing that her twin boys had this going on with them. Soon after her parents passed away, we began getting sick and one of us had to go to the children’s clinic. Not knowing about this disease could really be bad for everyone involved...get checked! This is what we are dealing with and it hurts!
I was born with sickle cell anemia SS. I have been having crises since I was 3, but I didn't get diagnosed until I was 17. The pediatrician told my mother that I had "growing pains"! Anytime I got cold, wet, or stressed I would go into a pain episode. At 16 I had to go to the doctor because I was having a lot of discomfort in my chest. We found out that I had over 140 gallstones. That's how I got diagnosed!
I was diagnosed with SCD as a baby. I always had flareups; however, I was diagnosed with fibrodysplasia to the right maxilla as a child as well. So I had to undergo at least 25 surgeries as a child to get my face back in order, having at least 5-10 blood transfusions, and I had to stay in the hospitals for months at a time, leading up to years. I barely was home with my family. I was raised by my aunt because my parents’ custody right was temporarily taken.
Having pain crises really sucks because you can’t predict them, meaning you can’t prevent them. As a woman, all my life I was told that I couldn’t bear children, and if I ever got pregnant I would be high risk and there’s a slim chance of the baby making it. However, I’m here to say that I am a mother and, yes, I was high risk, but he was full-term and he made it. He’s 2 years old now, will be 3 years in May and is in great health. SCD didn’t kick me – I kicked its butt!
My name is Joi and I have sickle cell. This disease has robbed me of many things in life, but I refuse to let it take over completely. I've suffered many pain episodes over the years, which resulted in just as many hospitalizations. I wanted so many times as a child to just die because the pain was so intense. I felt like I was deprived of a childhood because I couldn’t participate in many of the activities that my friends could participate in. For example, swimming. The cold water was a trigger.
We discovered that my grandson had sickle cell disease when he was 7 days old. This disease is so painful, and if you’re not educated about it, it will make you feel hopeless and useless. Especially when you’re trying to assist when the person is having a crisis. My grandson has been in and out of the hospital, from infancy up to now, a teenager of 18 years of age. He just graduated from high school in June 2018, but he decided to go to a community college instead of a college or university.
My name is Shaquana F. I have sickle cell beta-thalassemia. I never tell people that I have sickle cell because people are so cruel and so mean nowadays. They don't understand the suffering, the pain, and how hard it is. I have two children, 16- and 10-year-old boys. I have to be strong for them. I'm very stubborn. I do not like going to the hospital. I will be in pain and I will try to ignore it just to be a good mother/parent and take care of my kids.
It’s a lot when you have sickle cell disease. Your life is so different. I’ve been fighting for my disability and I've been denied. I had gotten a lawyer, but they expect you not to work. I have two children that I have to raise on my own. So I push myself to work even though I'll be in pain. Now the lawyer is not taking my case and it's getting worse the older I get. I just continue fighting and fighting, because my kids mean the world to me. I'll be behind my bills and rent when I'm in the hospital.
It's hard when the weather changes, when the cold weather comes. I have to take my kids back and forth to school, and I have to be in that weather. It's so painful and I cry and I cry and I cry, and I ask God to give me strength, because I know I'm strong and I know I'm not going to let this sickle cell bring me down or break me. Being a single mother with an illness is hard. My boys help me out so much and I appreciate it all. I just feel like it's my job to take care of them.
My name is Michael C. and I have the sickle cell disease. I am 20 years old and I was diagnosed with sickle cell when I was born, which was June 28, 1998, at the University of Alabama at Birmingham. Sickle Cell Anemia is a battle, and it took me a while to figure out what this disease can do to me. I had dreams of becoming something, but others had doubts that I am capable of doing anything because I have Sickle Cell Anemia. Ever since I was a little child, I have been told that I could not do this or could not achieve that, that my disease would hold me back. I cannot lie that it did not hold me back. When my flareup comes unexpectedly, I start to agree that, yeah, I cannot do anything. Those times when I get sick and admitted into the hospital, I feel like my life is going downhill, that I will never be anything that I set out to be, that sickle cell is going to stop me from everything. As a child, you give up easier and you care less about things. Sickle cell can put you into a depression that is unimaginable, and it will make you want to give up on everything.
When I was about 6 years old, I remember my doctor telling me that I would not be able to walk again. I was admitted for about two months to the children’s hospital. I was in a wheelchair and I could not even walk, because the pain was so unbearable, and I just could not stand on my own two feet. When you are a child, you will believe everything someone says, especially when it comes to your health. Then you start to wonder, will I ever be normal? Can I be happy like the other kids? As life went on, I didn’t know what to expect, because I was so terrified of my disease. I was terrified of the pain, and I didn’t want to do anything because I was so worried about what was about to happen. Growing up, I had fear but I understood my situation. I got sick so much that I wasn’t even in school. I was like 9 years old in the second grade. I failed kindergarten due to my sickle cell and had to start all over again. Being sick was something I feared for a long time, even now, but as a child it was way worse. At that age, I didn’t know how to control my pain. So, it took the best of me, because I couldn’t handle the pain. It really took control of me to the point where I couldn’t control my body. I couldn’t walk. I couldn’t move. I was just lying on the floor screaming. It was bad, especially how I remember it happening about 11 years ago.
Before I turned 10, my mom was getting married, and I was admitted for a week but got out two days before her big day. I remember my mom being sad, but she was never mad about the situation because she has sickle cell anemia as well. She was so worried about her big day, and I wasn’t going to stay admitted because I wanted my mom to be happy. I lied to the doctors to get out of the hospital by telling them I felt great and I needed to be home with my mom to be in her wedding. They let me go, and the next day I was at the wedding rehearsal and I was limping down the hall being the ring bearer. I fought the pain for my mom because I couldn’t let her down. I was definitely in pain, but I did my best to not let it get to me.
I started to think that I could control my pain at the age of ten, but that was a false statement. I went back to square one with getting sick and sicker, and I did not know what to expect once again. I was just tired of it, but what could I do? Now around that age, they started to give me opioid medication. They told me to take it for pain and that’s what I did, but I then I started to do it every 6 hours because I didn’t want to experience any pain because I couldn’t handle it. After a while, I believe I started to become addicted to the medication, because I took it every 6 hours, even when I didn’t have pain. If it wasn’t for my mom telling me her experience with the medication and telling me I do not need all this medicine at one time, I don’t know where I would have wound up at this moment. So, I let my mom give me my medication, but she started to help figure out how to control my pain in certain ways even in the most painful situation. As I got older, I was getting to the point of figuring out what I can do and cannot do to take care of my health. Like what clothes to wear, and when can I be outside and when I can’t. Like, for example, I do not like pools only because they can get me sick, and I experience a horrible sickle cell anemia crisis or flareup after I get out of a pool. I was about 12 years old and I couldn’t handle my pain, screaming for help and everything after that. I barely get in a pool now. I just stick my feet in the water, but that’s it, or if I get in a pool I do not stay in long.
Playing sports was something I loved to do, and it definitely was a huge part of why I got sick a lot. From football to basketball to soccer, I loved sports, but I knew the consequences of playing them and the result was being admitted into the hospital so many times that I lost count. I really started to figure out the things I love, so at the age of 13 I couldn’t care less what anyone said. Sports was everything to me, and I stayed focused and played from middle school till my sophomore year of high school. Some people asked me why I stopped. I was 16 years old in my sophomore year in high school and I was admitted to the hospital. My sickle doctor told me a story that changed my mindset forever. The story gave me the decision to not play sports or for an athletic team. Instead of me playing on a team, I would just play for fun. I started to leave sports alone and focus on school more. I wanted to figure out what am I interested in, but I just did not know for sure. I had to choose something that was not going to affect my health. I knew I was going off to college and I wanted to let my doctor know. He was asking, are you sure you can go off to college? To be honest, I was not sure if I could be able to continue my education. I talked to my grandfather about it and he told me, "Michael, you are going to have this disease for the rest of your life. You can either let it control you, or you can fight it and achieve your dreams and goals. Do not give up. Pray and have hope. You have to fight.” I have worked hard since I started high school being involved and becoming a young man who is now inspiring others. I keep the fight going because I want to be successful, and I have the hard work and commitment to push through the struggle of sickle cell anemia. As of today, I am a sophomore in college majoring in business administration with a concentration in finance and a minor in real estate. I promise to continue the fight and never let my sickle cell disease control me.
My son, Jerry, is 21 years old and he has sickle beta zero thalassemia. He was diagnosed at birth. I didn't even know I had the trait until I was 5 months pregnant. My son was hospitalized hundreds of times in his youth. As a young man trying to work, it has been hard for him. These jobs do not understand pain crises and, as a result, these young people end up losing their jobs. At most places you have to work there a year to get FMLA, but people do not make it that long without being out of work with pain crises.
Jerry is trying to work, since he is not disabled according to Disability. However, he has to go to a specialist every other month, he is on meds daily, and he has a disease that really can make it hard to work. His job made jokes in a text about him being sick. His manager refused to take his sick note. While he was in training to be a manager at local restaurant, they were sending group texts making jokes. They have no clue how sickle pain crisis works.
My son did try to go off to college, but they did not know what to do there when he had pain crisis, and the college was two and a half hours away. He plans on going back to school in January. We need to make jobs for people with this illness where employers understand, or maybe they can offer them FMLA after 6 months. People like my son want to try to work and live productive lives. They give up so much. Jerry spent so much of his childhood in the hospitals.
I remember when Jerry was maybe about 6 or 7 and it was around Halloween, but he was in the hospital. The nurses set up at different empty rooms and they rolled him around so he could do trick-or-treating. I always stay at the hospital with my son until he comes home, no matter how many days he is in the hospital.
My daughter does not have sickle cell disease or trait. I have two younger boys that I passed the trait to. We are aware of what that means. Sickle cell affects the whole family.
My name is Angel P. and Iʼm a single mother of a beautiful 9-year-old girl named Alana. Alana has sickle cell disease SS. I found out she had sickle cell disease a week after giving birth to her. I was 18 years old and had no idea what sickle cell disease was or how much of an impact it would have on our lives. When Alana was 5 months old, she was diagnosed with splenic sequestration, chronic asthma, and acute chest syndrome. I was so young and scared because we were in and out of the hospital weekly. At around 8 months old, she had a splenectomy and was put on chronic blood transfusions. We spent the next year practically living in the hospital. I couldnʼt work due to my circumstances and eventually I lost our apartment. We were homeless quite a few times while battling her illness. As she got older, she continued to battle sickle cell disease. As a mother you never want to watch your child suffer. As a mother itʼs been so hard trying to explain to my daughter that we have to move or I lost my job again. In 2016, while we were in the process of moving, she developed a limp. I wasnʼt sure what the cause was, so I took her to the hospital. The hospital at that time told us that it was just a little crisis in the leg and sent us home. A month passed after our move and she continued to limp. So once I changed her hospital, they ran some tests to see her entire body! I then found out she had a vascular necrosis of her right hip and iron overload. Alana turned 7 years old and was placed in a wheelchair. That year was hard for the both of us. Not having a car and in and out of the hospital. Where we moved was 50 miles from the nearest hospital and low on transportation. In 2017 Alana had stem cells injected into her femur bone due to the collapsed bone. Two weeks later, she began walking again. We had a great year after surgery. I couldnʼt believe that from March of 2017 until April of this year (2018) Alana was able to walk and was hospital free. Alana began experiencing migraines and hip pain in April of this year. I didnʼt know why because I thought the surgery was a success. She got admitted into the hospital and we found out she had necrosis in the pelvis bone. The ortho doctor said her femur bone was 100% healed but that her pelvis bone is now deteriorating. Unlike the femur bone, her pelvis bone is unable to get stem cells injected so she was placed back into the wheelchair. She is now 9 years old and sickle cell has caused us so much pain and suffering. Alana has suffered academically and is so often in pain that she doesnʼt have time to focus on school. Sickle cell has caused my daughter to feel different, insecure, alone, and depressed. Even though weʼve had to move a lot, God has blessed us to be able to receive in-home support service. This illness has showed us both how strong we are and how much God loves us because even though we endure so much, he continues to provide for our needs. I never was given the chance to tell her story. Iʼm taking this opportunity as we lay in this hospital currently to share my experience with sickle cell. Alana was given the gift of being a Make-A-Wish candidate and got to travel to Disney World! I believe that one day she will be cured of this disease, and until then I will continue to fight for her and with her.
My name is Margaret B. and this is my story. I was diagnosed with Sickle Cell Anemia at 18 months old. Having been born in the early 50s, Sickle Cell Anemia was unbeknownst to most people. Once I was diagnosed, the doctors gave me at most 18 years to live. However, God had a different plan for my life and it is because of his grace and mercy that I have lived to reach the age of 67.
As you already know, Sickle Cell Anemia is a very debilitating disease. I have experienced many crises in my life, survived many surgeries, and several bouts of pneumonia. Just recently, I received a cancer diagnosis. Needless to say, this hit me like a ton of bricks. But, my faith in God will and always has sustained me through it all. I am proud to share my testimony with everyone everywhere, starting in the church. I have been told by many that I am a true source of inspiration and that in itself makes like worth living. I was told by the doctors that I would never be able to bear children. But thanks be to God, I gave birth to a beautiful and healthy baby girl. I feel that being a mother has been one of my greatest accomplishments in life. That baby girl has blossomed into a beautiful young adult woman who recently graduated from college with her Doctorate in Business Administration (DBA).
I have always maintained a very positive outlook as far as my illness is concerned. I may have Sickle Cell Anemia but Sickle Cell Anemia does not have me.
Where should I begin? Well I will start out by saying I was blessed to be born with sickle cell anemia! Blessed? Yes, blessed! I consider my chronic disease as a blessing from God. It makes me unique and different from everyone else. It took me a long time to discover this, but I am so glad I did. Growing up wasn’t easy for me, I mean how do you explain to your friends in elementary school that my body hurts really, really bad if I run and jump with them, or even go swimming. There was no pity party at my house. My parents and sisters made sure of that.
When growing up I wanted to be a ballerina, not necessarily because I like to dance, or even could dance, I just really liked the outfits that they wore. However, having a disease that causes severe pain in my joints, that early career plan was not an option.
My parents decided to give me alternatives to physical activities. My mom made sure I had every colored pencil, every marker, and every type of construction paper and paint. Designing ballerina clothes was my first sign of being a fashion designer. But I also would sit in my mom’s closet and rearrange her handbags and play dress up with them; that is where my love of handbags was born.
As I was taking a handbag elective class, I discovered that I can not only rock my favorite accessory but that I could make it as well. I was VERY drawn to a specific pattern, so I made some adjustments to the pattern and made it my own. And that is where Kisa Kisa Handbags was born.
When my handbag is closed, it is shaped like a hemisphere, or sickle–just like my sickled red blood cells. But when the handbag is opened, it is shaped like a regular blood cell–a whole circle. This was an entirely unintentional creative choice on my part that never would have been realized if it weren’t for a friend of mine. To this date I have sold over 500 clutches. I have been on local news stations and talk shows and in newspapers speaking about my fashion journey and bringing awareness to sickle cell disease. I was also asked to be the spokesperson for the Gulf Coast Regional Blood Bank. That has been one of the highlights of my journey. I am bringing awareness to the disease one handbag at a time. Now do you see why my disease is a blessing and not a hindrance?
My name is William B. I am 36 years old, and I have hemoglobin SC sickle cell. My daughter and son both also have hemoglobin SC. My son also battles a terminal disease called Alexander disease, and my wife has the sickle cell trait. I have lived a very different life than most other people I know. I graduated from high school at 16 with hopes to compete in Taekwondo for the Olympics. I’ve been to college. I work a full time job. I’m an IT specialist as well as a martial arts instructor.
During 2016, my entire household, with the exception of my wife, had a sickle crisis during the month of December. My daughter was first and when she came home, I went in. I was determined to get out for Christmas and I did, but my son was already there battling Alexander disease and sickle cell and had to get a blood transfusion. We ended up spending Christmas at the hospital, but we got to see Michelle Obama pass our room so we’ll always remember that Christmas.
Hi, this is Dawnell. I have lived, breathed, and slept sickle cell for 19 years. Sickle cell has been a roller coaster and a scary movie all in one. I’ve had about 7 surgeries. Right now I’m having a battle with my doctors. They took my pain plan at the hospital away and I have nothing to help when I’m in severe pain, just have my home meds. They think I’m having chronic pain and I’m dependent on my meds. I know my body and I’m trying to tell them but they are doctors. Like I was saying, these doctors think because they got that title they know everything and they’re right. They act like they know my body, but they don’t. I can be crying in so much pain to my doctors and they won’t give me the pain medicine I need. The thing is I don’t go to the hospital that much, so if I go I’m in a lot of pain. I’m not going to get poked just for fun. Recently, I just started getting blood transfusions and I love it because I don’t have chronic pain anymore. Now that I have the blood transfusions I’ve literally changed. I have not been pain-free in like 3 years due to chronic pain and now I’m free. I get to prove to my doctors and mom that I don’t have a problem nor am I dependent. It was due to pain. I needed to find different ways to help and my pain meds helped. Now I barely take any and I’m just a different person. My mom sees it and I see it. Like I said, I know myself and my body. I knew I didn’t have a problem, now I’m just waiting to get my pain plan back and the judgment to stop. They say they can’t tell the difference between chronic pain or a crisis with me, that’s why I don’t have a plan which is so STUPID. I’m going to stop here if you want to hear more of my story, let me know. I’m just glad y’all are doing this because people shed no light on sickle cell and it’s wrong cause we go through hell and people are dying. It’s serious and no one pays attention to this illness.
I am the wife of a wonderful loving husband who suffers from sickle cell anemia. I was unfamiliar with sickle cell disease, as no one in my immediate family had suffered from it. After being married to my husband for less than 3 months, I went with him for his first appointment with a new doctor who specialized in sickle cell disease. Sometime during this checkup the doctor turned to me and clearly stated that he would be surprised if my husband lived past 40. I was taken aback by the doctor’s forwardness and the thought of losing my husband in 8 years since my husband was 33 at the time. I was angry with the doctor for telling me this devastating news and then I became angry with my husband for having this disease and marrying me knowing he could possibly die from it. I felt cheated. That was 25 years ago! Not only was he fighting his sickle cell crises, now he had to fight the cancer. And fight he did! He beat cancer and is stronger in both spirit and body. My husband is an ardent workout person. He goes to the gym faithfully and calls the gym his sanctuary. The gym is where he gains his strength to fight his crises when they occur. I have witnessed my husband’s unwavering faith and tenacity to push through his pain every day, and let me tell you, he has had some days that I thought he was not going to make it. Even now, as I type this letter, he is in pain. There is not a day that goes by that my husband is not fighting this pain. But his workout ethic, his commitment to help others with this disease, and his wonderful spirit are what I think keep him alive, even when faced with a crisis. He is an inspiration for people who have this debilitating disease. I want his story to be one of inspiration and hope to all who suffer from this disease. I want his story to be a little light in the face of pain and hopelessness. He is a fighter, a survivor, a mentor, and a wonderful husband to me and a wonderful son to his mother. I love this man. His disease has taught me how to deal with adversity. There are no excuses that I can make when I look at my husband and see what he has been through and goes through daily. None! I am blessed to have him.
I recently completed my 42nd year with this disease. I am blessed with a strong support structure which includes my wife of 12 years and two loving children, ages 11 and 2. We have had struggles, mainly my many sickle cell crises and some family crises—my youngest being born at 26 weeks. These struggles have strengthened my family's resolve to live every day to the fullest. My family has become more vocal about living with and supporting those that live with sickle cell. I have been blessed with an affliction that causes me to live life to the fullest. My career is a big part of living my life. I have been with my current employer for 14 years and I have thrived even with my many health challenges. I play an integral, strategic role with a Fortune 100 company and have held roles with increasing responsibility. This proves that one can still have a successful life, even while living with an affliction as great as sickle cell disease.
My name is Shabreon H., and I have sickle cell anemia. My life consists of pushing myself to my full potential after deciding that I would no longer be letting sickle cell or any other tragedies in my life hold me back. On so many different occasions, I have felt like giving up. It’s hard to fight for a life with the same disease that claimed my own mother’s life. She was only 25 years old. I vowed to make her life and my life mean something by using my gifts for filmmaking and writing. I decided in 2016, after experiencing my own personal tragedy, that I had to choose life. I was so emotionally overwhelmed and it was causing my body to fail me. I had to decide to pick up the pieces of me that cut so deep that it could have claimed my life. I have a little girl to live for, so I took it upon myself to become more actively involved with the sickle cell community. I helped others use their creativity while using my own gifts to spread awareness. I couldn’t stand to see the state of the sickle cell community a few years ago. People were in so much pain physically and mentally; if it wasn’t bad treatment in the hospital, it was family or friend problems. All things I have experienced growing up with this illness. I wanted to help inspire and uplift others with people who weren’t letting this disease hold them back. I have always made sure to bring projects of hope and encouragement. This campaign is my best one yet.
Hello. My name is Jemela, I am 37 and I have Sickle Cell Anemia SS. My Mom tells me I was diagnosed at about 3 months old. She said I would cry and cry and she wouldn't know why. I remember when I was very young, my Mom would walk to the metro bus with me and would walk or ride no matter how far, how cold the weather was, just to get me to my many doctors’ appointments. I attended the Children's Mercy Hospital hematology department’s Sickle Cell Clinic. My doctor was and still is one of THE BEST doctors ever. I think few doctors have a staff that is equally talented, compassionate, and caring as was the case in the CMH's Sickle Cell Clinic. When I was much older, around 8-10 years old, I was out at this well-known, sort of swap meet, kind of place called Swap n Shop. I was with my Mom and her friend and her friend’s daughter. I was sitting in the back of the hatchback car eating french fries when all of a sudden, I just felt really horrible and queasy and eventually threw up. My Mom's friend (she was a nursing assistant) felt my forehead and told my Mom that I was burning up. I believe that I might have been going in and out of consciousness for a minute there and they began to pack up and proceeded to rush me to CMH emergency. From the story I've been told, the ER staff said I might not have made it if they'd been a little later getting to the ER. I had meningitis. Now my memory is really fuzzy about this time, but I believe I was hospitalized for over 2 weeks or so, possibly more, but I can't recall. What I do remember is being completely annoyed and scared when in the middle of physical therapy my nurse would come interrupt and I knew I was getting some kind of shot or she was taking blood. I vividly remember at one point my eyes became crossed involuntarily for a while. There was also a time when my heart stopped in the middle of the night and my Mom said the staff came in running all over the place while the machines beeped loudly. Luckily I was okay and was able to leave the hospital eventually and return home with no lasting effects.
I had many issues with sickle cell when I was younger, from ER visits, hospital stays, sometimes missing days of school at a time. My Mom has always been right there, whether she's seated next to my hospital bed or pacing outside my room back and forth while the nurses are putting in my IV, because she absolutely hates needles. I always tell her, it's not like I like them, I'm just more used to them! I've had the weirdest placement of IVs because if I have to go into the ER for a crisis, then you better believe I'm definitely dehydrated. I've had one in my vein on the right side of my neck, one in my foot, and once an ER doc actually drilled a hole in the top of my knee cartilage to put in a IV! That seriously hurt! The longest time I've been hospitalized is about 30-31 days, back in about August of 2005, I believe. I was in the middle of enjoying myself at Camp Courage, when I got extremely sick. Camp Courage is a camp for sickle cell kids, ages 6-14 that is put on by Children's Mercy Hospital with the help of Turning Point, a wonderful charitable organization that helps to fund the camp. I began being a camp counselor back in 2000 and remained one until my last year of 2005, when I had to leave early due to extreme sickle cell pain. There was a full staff of nurses and a doctor and they tried to do what they could to get my pain under control, but no matter how much they did, even though I'd taken my pain meds on time, nothing helped at all and the pain continued to worsen. So two of the staff members had to pack me up and take me back to Kansas City, which was about an hour-and-a-half away from the campgrounds. I was in so much pain that it was hard to think about anything else but that as I tearfully told my kids from our room goodbye. The pain was so bad I just wanted it to stop, by any means necessary. I was in so much pain that my legs were involuntarily shaking nonstop. I remember praying in the backseat to please let me make it to the hospital, please let me make it to the hospital.! So we did and my Mom was there to meet me. I ended up staying about a month. They could never get my pain level down far enough so that I could comfortably be able to return home and not have to come straight back to the ER. It got pretty scary for a while there as my hemoglobin had dropped very low.
I have lost several friends from complications due to sickle cell. Two of my dearest friends died within a month or two of one another. I was so distressed about it that there was not a day that passed when I did not cry. I would go to sleep crying and wake up crying. I was taking my medicine, but at the same time I wondered what was the point of taking any of it if I was going to die from an infection, or some other complications from sickle cell? I was working, but it was really hard to concentrate on anything but them being gone. I would go to the restroom and just cry. I think it definitely began to affect my health. I would be in pain and would constantly call into work. I'm always in pain on a daily basis regardless. It’s pain that just NEVER goes away, EVER, but I think being depressed on top of everything made it 10 times worse and affected my everyday life. I had never been depressed before and I don't think I knew that I was either until my Mom said I was. She came into my room and mentioned how I sleep all day with the room completely dark, how I didn't go out anywhere and cried all day and called into work all the time and she said, you're depressed and you need to talk to someone. So, I guess it was an epiphany at that moment. So, I contacted a hospital and asked about seeing someone and I began talking to a professional there. It did help to talk things through with someone who didn't know me and could bring an outside perspective. Depression is not talked about, if at all, but especially not in the Black community. I don't think anyone knows about my past depression other than my Mom and my best friend. I definitely believe it should be talked about more and more so that it is not seen as a stigma and is seen more as just another trip to the doctor, just like anything else you need help with, any other health issue that you cannot remedy on your own. It should not be made into a big deal, you shouldn't be called crazy, you shouldn't be ridiculed because you're strong enough and smart enough to ask for and get the help you need. Those things have never happened to me because not many people knew about my depression anyway, but we all know it happens to other people. It's always important to get the help you need, no matter what other people may say or think about you. Because believe me, I was EXTREMELY skeptical that I could be helped by a psychiatrist or a psychologist, but it did indeed help me. Honestly, I did not really rely on the depression medication I was given, but more on the conversations I had with the psychiatrist. Once I started to talk to him, I was more open about talking about it with others, like my Mom and my friends. So going really did help, and I was grateful to my Mom for pointing out the obvious, even though it was not obvious to me, and pointing me in the right direction to seek out help.
I've been going on and on about my life the past years, so I figured that I should tell you about my life right now. Currently, I'm not working and on disability. But I do have a great volunteer job that I truly love. I work for an organization called CASA. My branch is the Jackson County CASA. What they do is help children who come into the system by any means, whether it’s due to abuse or neglect. They train volunteers to advocate in the best interest of the children. My job description as a CASA, which is a Court Appointed Special Advocate, is to be that child's or children's, voice. I visit the children in whatever home or facility that they are placed in at the moment. I sit and talk with them about how they're doing, how they're feeling about where they are now, do they like it there, or having any issues there I should know about and is there anything they want me to let the court know? I also go to court dates when needed, especially when the children must be present. I was extremely shy at first and wondered however will these children react to me? It had been years since I'd worked with children since back at Camp Courage. But in April 2017, I saw an ad for CASA on the news, called the number, filled out an application and a background check, and began training. Now I've been there for over a year. My very first case, I got 4 kids, which soon became 5 kids, ages 1-12! I adore every minute I spend with them and enjoy playing with the younger ones, coloring, talking, and everything. I especially love the hugs I get when I show up to see them. It a very rewarding experience, and I intend to continue with it as long as possible. This month, November, I've had to cancel my visits for the month because I just have been in so much pain since the cold weather began. I've never explained to them that I'm sick or anything like that, but their guardians do know about it. I felt it was very necessary to explain to them why I wouldn't be able to show up this month. Though I'm still in a lot of pain daily, mainly my back and legs, I plan on showing up in December, fingers crossed, anyway! But of course I never know from day to day, how I'll be feeling. Which is one of the most difficult and frustrating things about having this disease, sickle cell anemia hemoglobin SS. You can be fine one minute and seconds later you could be all of a sudden doubled over in extreme, horrendous pain.
I have always wondered why more people, or rather more celebrities, do not try to speak out about sickle cell disease. I say celebrities, because it's obvious no one nowadays would pay any attention at all unless it comes from a celebrity, which is sad, but true. I feel that some people actually have the platform to do more but they sit back and don't do nearly enough. I am still pretty shy, but I'd definitely love to have the ability to speak out about my disease and educate people on it and let my fellow sickle cell survivors know that if we stand together and raise all our voices, there's nothing we can't do.
I control you, don’t you see; don’t try to run or hide, you’ll never be free. I tell you how to look, what to wear; I even tell you how to wear your hair. Put more clothes on, too cold to be cute, you need a sweater on top of your bathing suit. I tell you when to stay in or when to go out. Excuse me, I can give you something to cry for; that better not be a pout. SCD, you don’t control me. Education, treatment, and meds set me free. Divorced three times, a mom and a nurse, SCD you’re not a curse! My best friend, many patients not more than half my age, and my older sister died from complications of SCD. The first pediatric ICU patient of mine that died was just 3 years old. His mother and I sat at his bedside and watched his life slip away. I knew I would be different. I used to be sick, hospitalized every 2-6 months until I learned how to properly care for myself. I’ve had many close calls but my 3 children are able to enjoy me and my full life as a pediatric nurse and soon to be grandma. Once upon a time, SCD was a nasty childhood illness. When I was 9, I read in an encyclopedia that people with SCD died before they became teenagers. I cried to my mom, she reminded me that my sister was 18. That was 45 years ago. I have been married, attended a master’s program, had three children and helped other people with SCD. Soon to be a grandma, I am living happily ever after.
Back when I was a little girl, I remember all the attention I was shown, because I was the sickly one. I can remember my hospital stays were painful but exciting in a way (all the attention). It seemed like I would have to be there at least one week out of the year, which is not long for a sickle cell patient. Just the touch of their warm hands soothed me, but not my body. I’m so blessed to have the family I do. Let me also mention that me and my oldest brother were the two children out of five who suffered with Sickle Cell Disease. Unfortunately, my brother passed away in 1993 at the tender age of 28. Oh, how that scared me, but I kept the faith and my eyes were opened wide after that. I started exercising more, drinking more water, and taking my folic acid daily. I can say I’m truly blessed, because the doctors would tell me all the time that I would not be able to do certain things. But being the determined person I am, I was a majorette in Junior High and a cheerleader in High School. They also said they didn’t think it would be a good idea for me to have children, but I don’t think that’s anyone’s call but God’s and he is truly good to me. I’m blessed to have a healthy 25-year-old daughter with just the Sickle Cell trait. Don’t get me wrong, I have had my share of problems. I had a terrible delivery. God had my gall bladder removed in 2012, and in the process I found out that my spleen had deteriorated. It’s hard for me to fight off anything, but I keep pushing. Walking every day and drinking lots of water daily is my life saver.
My family calls me a busy body because I won’t sit down. I have a full-time job and about 3 part-time gigs…lol. But I love what I do and I’m going to keep going until I can’t go anymore. At this chapter in my life, I just pray and ask the Lord to keep me healthy. I want to one day see my grandchildren…(smile). I haven’t had a crisis where I have had to be hospitalized in 25 years (look at God). I have had minor crises, where I just take my hydrocodone and get my heating pad and after about an hour the pain would cease. It scares me sometimes because of all the talk of the lifespan of a person with Sickle Cell. I’m 52 years old, and right now I feel great. I will continue to try to take care of myself and go to the doctor as much as I need to. Now, I’m visiting my hematologist every 6 months and he checks my kidneys with a 24-hour urine test and does everything else needed to keep me healthy.
This is my story. I love me some me. I have great passion for my sickle cell community. It breaks my heart to see anyone going through so much pain, especially when you know how the pain feels. I would love to be a motivator for anyone going through it, just to let them know–hold on, keep the faith and try to take care of yourself as much as possible.
Thanks for listening….
My name is Tanyshia, and I have sickle cell anemia, type SS. I am blessed to have made it to 33 years old. Living with sickle cell is definitely a challenge. As a child I was in and out of the hospital a lot. In high school I was not sick as much, and I got to march (6.5 miles) in the Rose Bowl Parade with my high school. As an adult, I seem to be in and out of the hospital lately. Also, being an adult with this disease has a different set of challenges. Like, having a job and taking care of yourself. Sometimes, I have energy to get a lot of things done in a day, and other times I struggle to want to get out of bed. But I try to do the best I can and to do as much as I can when I am well. I love to spend time with friends, travel, and do arts and crafts. My friends don't always understand when I can't go out or have to cancel plans because I'm in pain. When I travel, I have to make sure to stay hydrated. I recently traveled to Greece and let’s just say water was scarce. They like to drink wine there, and it was hard to stay hydrated on just wine. Coming back to the States, I fell asleep on the plane and we got delayed in the air for two hours. This triggered a crisis, and I had to go to the hospital because of the air pressure being in the air that long and because I was dehydrated. Going to the hospital when I have had a crisis can take a lot out of me. I can be out for weeks just to recover. I had fun and I hope to do more traveling in the future. Doing arts and crafts helps me to relax and take my mind off the frustrations of being sick. I stay positive, and try to do the best so I can educate others on my disease. I want to tell others, "Don’t let your illness stop you!"
Generation S member telling their story.
My name is Patria, and my sisters suffer and suffered from Sickle cell. My sister is on the right side and as you can see, she is so beautiful. She is 48 years old and was obviously born with sickle cell as it is a genetic disease and not a disease you can contract. We had an older sister who died from the disease when she was in her 30s. Kisa is pressing on as a result of the complications, turmoil, and pain she suffers from sickle cell. She has not let this disease define her!
I am Chanitel, a 35-year-old woman living with Sickle Cell. I credit my mom and grandmother for helping me with this struggle. They had no idea what this disease was, just that I was suffering in pain. Sickle Cell Anemia rarely gets any attention, it’s like living silently in pain. However, I try my best to stay positive and fight. This disease took the lives of my dad and three cousins. I hope we continue to bring awareness to this illness. I can remember a doctor telling my mom and grandma that I would not reach the age of 25. I stand here today at 35 years old living with Sickle Cell Anemia. I would describe the pain as little army men beating my bones with bats, that's how bad the pain was. I don't have children, as I'm afraid to pass it on to my kids.
I have hemoglobin SC. I am 54. I've had 13 surgeries and I’m about to have my hips replaced. I’ve had numerous blood transfusions and a few exchanges. I am a believer that God is my helper and healer. I am also a stomach cancer survivor. Life challenges have been rough but I have pulled through with prayer and a positive attitude. I go to UIC in Chicago and have had great results. I'm not a candidate for the stem cell treatment, but I'm still praying for relief from this debilitating pain.
I have 3 kids with sickle cell disease. Last year, on August 17, 2017, my first-born child died as a result of sickle cell disease. He was 27 years old. He had endured a stroke at the age of 5 and again at the age of 6. I had him when I was 17 years old. When I learned that he had the disease at birth, I researched the disease to get as much information as I could about it. When I had my second child, again I was told that he had the disease. My fourth child also has it.
I was born with the debilitating, cruel disease called sickle cell disease. My two older brothers also have it. Oh, did I mention that my oldest brother died last year at the age of 27 from this disease? My mom lived most of our lives in and out of hospitals. If it wasn't one child having a crisis, it was the other. My mother became a nurse shortly after the birth of her first child at the age of 17. Her first two children have a different dad than me, so it was just her luck that both men carried the sickle cell trait.
My brother was diagnosed with Sickle Cell. He had the worst pain every night. He lived in Nigeria. We spent a lot of money for treatment, for blood every two weeks. Even with the expensive treatment, it was still getting worse and he got sore in both of his legs. We were trying hard to bring him here to the US, but he gave up, the pain was too much for him. He died 2 weeks ago. It's the most painful thing ever in my life. It still hurts, and it’s very hard to forget. If there’s anything I can do to help others, I will try.
Can you imagine having a chisel and hammer pounding into one of your joints, causing the worst pain imaginable? What about actually being in that pain, getting yourself to the emergency room only to be treated like you’re being dramatic or are seeking drugs? No? I can. I was born with Sickle Cell Hemoglobin C Disease. I’m a 28-year-old wife and mother of 2 beautiful little girls. Both of them are carriers of the C trait. This is my story.
Hi, my name is Solomon C. and I am a sickle cell patient. I'm the youngest out of 7 children, 3 of which are sickle cell patients. My story is very similar to anyone else's. I was born into this sickness and will without a doubt die with it. Although I know that it's hard to carry on and live a somewhat normal life, I also know that if you let this condition get the best of you, then you will never get to live the life that you are capable of living. I love life, but it is hindered by sickle cell anemia.
One of many, many experiences I have had was when an emergency room doctor gave me a medication that sent my body into a severe withdrawal. The doctor did not check my history and gave me a medication that I had never taken before. It was given to me in my port, which caused my blood pressure to get really high. When the “doctor” realized what was happening, he then looked up my history and had the nurses administer the correct medications.
When I was 17 years old I struggled with depression and I didn’t tell anyone. I kept it to myself. I knew it was dangerous to do so, but the only person I was willing to talk to about it with died two years ago. Besides, I knew that if I couldn’t handle it myself then how was I supposed to grow up and become an adult? So, I helped myself overcome one of the worst events in my life.
It was a Monday morning when I was going to St. Christopher’s Hospital to get my blood transfusion, like I do every month. When I got there to receive blood, my nurse, Nicole, told me my hematologist wanted to see me. I knew I didn’t have an appointment with her, so it was a concerning matter. When I got there to see her she told me that studies shown in my TCD revealed significantly elevated blood flow due to my stroke and that I was going to be on blood transfusions for the rest of my life. All I could do was close my eyes and imagine myself being back at school sitting down in math class doing my work when this kid turned around and noticed my IV marks and asked me if I did heroin. I was shocked. I felt angry. I thought to myself about all those hours I stayed at the hospital, and what pain I go through when I get pricked with the needle, the bag of blood that goes inside my veins, how cold it felt, like a frozen lake in December, feeling the coldness all day until it's over, and then the tiredness afterwards. Then I remembered, though, that feelings are intangible, so I said “no” and ignored him. I came awake from my flashback and came back to reality. I smiled at my doctor, said thanks, and left knowing that this is when my depression began.
The next day I got up to get ready for school feeling tired and weak from the day before. I rushed to get to school on time. By being impatient and rushing to get to school, I got a headache. With all the running I did getting there, I was still late. After I received my late slip, when I was walking up the steps, my headache was getting worse to the point where I wanted to cry. My heart was beating faster and faster by the minute. I walked up four flights of steps straining not to cry. I was walking in the hallway when a teacher passed me and asked if I was okay. I told her I was fine. Without making eye contact, I ran as fast as I could to the girls’ bathroom just to cry for a while. I looked in the mirror and asked myself, are you ok? Looking at my tears falling in the sink, I knew I wasn’t. I cleaned my face and finished out the day at school. I went home upset. I didn’t eat anything. My family saw that I was being strange, but they weren’t too concerned. They did ask if I was ok and I told them I was. That night I had a sickle cell attack and I was in pain. I couldn’t move, but I didn’t inform anyone because I already knew what to do when a crisis occurred, but I didn’t do it. Instead, I let the pain continue until I was numb and looked at my four walls in my room still feeling depressed.
My depression continued for another month. I wasn’t taking my medicine. My hair fell out and my grades suffered. No one knew I was depressed but me. I didn’t know if it was a good thing or a bad thing to hide emotions and put up a facade. But at that point, I didn’t care about anything. About a month later, I had to go back to St. Christopher's to see my hematology doctor again. She said if there was no change by next month I would be in the hospital for 2 days getting medicine fed to me by a stomach tube. At that point, I blocked out all sound around me until I got home. I knew I had to talk to someone. I didn’t want to do any more self-injuries than I already done. I decided to talk to the only person who understood me—my grandfather. My grandfather, even though he had died 2 years earlier, always said his spirit would still be around, so I closed my eyes in my room and talked to him like I was at a Catholic church confessing my sins to a priest. I said, “Popop, what do you do when you want to give up but you won’t let yourself? I want to be normal. I don’t want to be in the hospital more than I am at school and home, having sickle cell and also having strokes and going to need a hip replacement at the age of 18 and now being on blood transfusions every month for the rest of my life. Life is too hard. I remembered you told me that everything happens for a reason and it's determined on how I can take it. You told me I was strong-willed and rebellious and that I can survive anything, and truthfully that’s what I’m afraid of. I know life can be hard, but I didn’t know it started so young, but I’m sure people around the world have more problems than me. I’m selfish for even having thoughts about giving up on life no matter how cruel it can be.” After that talk inside my head I had with my grandfather, I went to sleep and began a new day. I started to have a positive attitude from then on and I took care of myself again. I started taking my medicine every day and I got my grades up just before the month was over. I didn’t have any more depression. After I controlled my fear, there was only one thing I was waiting to hear back positive from the doctor. A couple of days went by and I had to go see my hematologist again so she could test my iron levels again. My iron levels went down to a normal range and I didn’t have to get a stomach tube. I walked out of the hospital and smiled and said to myself, something else I overcame on my own. Maybe I am rebellious in a good way.
My name is Whitney S. I was diagnosed with Sickle Cell Beta Thalassemia when I was 2 weeks old. I received my first transfusion when I was 4 years old. Living with sickle cell has not been a walk in the park, but I have not let this disease get the best of me or control me. I graduated high school, got my Associates Degree, as well as my Bachelors in Theater Studies. I want to work in the entertainment industry to be an actress, but my real dream is to do voiceover work.
I’m 36 years old and I have sickle cell SS. I've recently lost 42 pounds and overcome my battle with depression. My story goes back to childhood dealing with being homeless, being in a gang, and surviving meningitis. I’m currently studying to become a personal trainer and work with people who also have sickle cell disease. I want to bring more awareness too. Last year I was so depressed, feeling like sickle was holding me back. I tried to take my own life. I overdosed on pain pills, but luckily a friend came and found me and called the EMS. After spending a few days in another psych ward, I realized I had to get right for my son. After I got out of the hospital I started working out and haven't looked back.
Both my sister and I have Sickle Cell Disease. It affects us differently, but with prayer and being proactive with care, like blood transfusions and medication, you can live a normal life. There are good days and bad days. We both agree that our mother has been our advocate. We have experienced make-a-wish and near-death experiences. We were cheerleaders in high school, but often missed a lot. We both went to college. Presently I am a senior at Grand Valley State University. My sister wasn’t able to complete her senior year of college because she had a sickle cell crisis and had to drop two classes.
My name is Rebecca. I am 42 years young. Mother of 2. I was diagnosed with Sickle Cell Disease at the age of 6 months old. I inherited this from my father, who had SCD, and my mother, who was a trait carrier. Out of 7 children, I am the only one who has SCD. I was told by my mother that I didn't have any severe crisis while young. I had my first SC crisis at the age of 18. Since then I’ve had many transfusions, surgeries, and hospitalizations. I fear most not seeing my children grow up. I educate them on having SC trait.
My daughter was diagnosed in her late 20s. That was and still is the worst time in my life as a mother and caregiver. I watched my daughter fight to live each and every day. There would be months sometimes when she was doing ok, and in her 30's she was in and out of hospital where she received more than 40-something blood transfusions. She was a nurse at the hospital. When she turned 40, my husband and I lost her. I haven't been myself since. I wish I could have done more.
My name is Victoria W. and I have been suffering with the pain of sickle cell since I was 3 years old. Now I am 25 and pregnant with my first child. It hasn’t been easy for me. I have been hospitalized about 5 times with my pregnancy. I am Christian so I believe that God is with me and I will have a safe delivery. Right now, because of restrictions placed on me by my doctors, I am out of work and at home. My parents are the ones taking care of my needs. Life is very hard living with this disease.
I am a 53-year-old African American born with SCD. I have suffered MANY illnesses as a result of this disease. For example, I had a stroke 25 years ago which resulted in paralysis and weakness on my left side. I also have severe lung and heart problems, frequent upper respiratory attacks, and NUMEROUS Sickle Cell crises.
Growing up I didn’t understand much about sickle cell and didn’t really know why I was always in the hospital, but my mom made sure to educate me and my siblings for us to understand sickle cell more. You ever felt like you’re destined to be great, but every time you have your mind on it in a blink of an eye you’re in a hospital bed? You ever make plans and get so excited about them, and the day comes and you’re in full-blown pain? Yeah me too. I’m not only fighting for me, I’m fighting for my sister too.
My name is Aisha B., I'm a 32-year-old New Yorker. I have sickle cell type SS. I have had 5 strokes, and 14+ surgeries (with at least 3 more pending). Due to my health issues, I was unable to finish college. Even though I didn't get a chance to complete my education, I still advocate and educate, so people will be more aware of this harsh and deadly illness.
Hi, name is Aisha W. and I was born with sickle cell SS. I was diagnosed at 6 months old. I have had meningitis. I was told I wouldn't live past 18 years old. At 16 I had my first stroke and at 21 I was overdosed with too much IV pain meds. I stopped breathing and almost died. At 23 I was rushed to the same hospital where the same thing happened, a 40-second stroke. I went through acute chest, crises, stroke, doctors’ mistakes, but you see me, you would never know. I'm strong and will keep fighting.
My purpose is being a walking testimony for many others who are living with Sickle Cell. My name is Helena, and I live with this painful disease called Sickle Cell Anemia. I was first diagnosed back in 1983 at Children’s Hospital in Oakland, California. The doctors placed me in my mother’s arms and proceeded to tell her I would have a short life span, estimating I’d live until only 12 years old. Boy were they wrong. That wasn’t God’s plan for me. I’m 35 with a beautiful 10-year-old girl.
My name is McKenzie F. and I'm a 36-year-old mother of 2 living with SCD. I was diagnosed at birth. I had my first crisis at 2 and I was placed in protective custody due to bruising caused by SCD. Two weeks later I was returned to my parents, but that was the start of it all. Countless ER and doctors visits, constant pain, blood transfusions, lost sight in left eye from sickling! No matter my circumstances, I always remain positive, it makes coping with SCD easier. I rarely take pain meds.
I had some bruising on my arms and legs, so I showed them to my hematologist. He told me that it's not from SCD and I must have another blood disorder but never checked. How can we thrive when our own doctors won't believe the pain we feel? This is why I rarely take pain meds. They try to make us all out to be junkies. So, I chose a different approach but no changes. Some of the pain associated with SCD is unbearable. I've learned different coping techniques such as heat therapy, etc.
Every day I think about my Sickle Cell friends who have passed or are not able to go to college. I fight for all of them throughout the journey of my college experience. My name is Amran L. and I have Sickle Cell Disease SC. I have my associate degree now and am getting my Bachelors in December of this year. Don’t give up on your dream in life. Some days will be better than others. The days you end up in the hospital, just get well and come back even better. Have fun and enjoy life.
My name is Wendy and I am 51 years old. I have been living with sickle cell for all of my life. I have seen several of my friends lose their battle with this illness, but every day goes by that gives me another reason to thank God that I'm still here. There are some days when the pain is so bad I can't even get out of the bed, but throughout my life I have managed to finish school and work on a job for 8 years until my body wouldn't allow it anymore. I’m fighting every day for the next day.
My name is Britney S. I am 21 years old and I have Sickle Cell Disease. I was diagnosed with Sickle Cell at 4 months old. My crisis was worse as a kid than it is as an adult. My journey with Sickle Cell became a real challenge at the age of 16. I was constantly in the hospital, week after week and even month after month. Things became harder for me in those years. The most challenging part about it was the hospital visits.
I'm Lisa Q. and I am 50 years old. I have Sickle Cell Anemia. I also have 3 beautiful children: a son who is 26 and twin daughters who are 20. We serve an Awesome God and I give him all the glory, honor, and praise because He delivered me out of a coma when I was in critical care ICU for a week and a half. That was 11 years ago. Since my 20s I've been blessed to have a wonderful hematologist, one of the best who can always put a smile on my face even when I'm in pain.
Our angel, Jacquelyn W., graced the face of this earth on January 16, 1948, and the world hasn't been the same. Of course, it would be too easy to slide into existence without kicking up any drama, but not my mom. Jackie came in like a tidal wave. Being born to two loving Christian parents, life would be a challenge from the beginning. My mommie was born with a debilitating condition known as sickle cell disease. In that time sickle cell was a medical mystery. They didn't know how to treat her. She would endure much suffering throughout her life with hospital stays, time off of school/work, and living with the constant unexpected onset of crises, each one more life-threatening than the last. For most people that would be the great equalizer...But not my mom.. It only strengthened her resolve and made her fearless where she learned to appreciate every day. Those who knew her never imagined her daily challenges. As doctors told her she wouldn't live past 23, she proved them wrong. Boy did she!! She went on to get married, to have 2 beautiful children... Moi (Drawing a heart around my face) Dineen and my brother, Charles. She went on to be a pioneer working in the TV industry at KPLR Channel 11-St. Louis, Missouri. She was self-taught and became one of the first black female engineers. She also worked on numerous independent productions, showing me the ropes along the way. Back then the industry was totally different and hindered efforts by women and especially women of color. It deterred me from pursuing that dream, but I would take a different, still creative path. She would go on to work for KMOX/KMOV, now Tegna, for 33 years where she retired. The brutal cold and miserable weather takes a toll on people who have sickle cell disease, even those who have the trait. She recognized that altitude and barometric changes would severely affect her. So, what does my mother do? She unknowingly ends up developing lifelong friendships with 2 ladies who would ultimately change and help maintain her life for the better. My mother and I saw a new black female doctor who just opened her office, who didn't know at the time she would become an expert on treating patients with sickle cell anemia. She took upon herself to learn about the disorder and ultimately become my mother's personal concierge physician. This woman is part of the team of Jackie's Angels. She is my She-ro. With me and my brother both having the trait, she always monitored my health to see if I ended up having challenges. Having the trait all of my life has been uneventful except for as I age I can tell what things I have been cautious of. The other "Wonder Woman" in Jackie's life was a meteorologist who she worked with as part of the crew that produced the news broadcasts. She would be instrumental in providing my mom with the stormfront projections. In those days, meteorology was a lot more difficult and sometimes inaccurate, but the meteorologist was on top of her game too. When the barometric pressure would rise or fall, it would trigger a crisis. I have learned so much about this disorder from my mother's pain and suffering. Watching someone go through a crisis is horrific. You are helpless. They are begging for relief from their pain. It would be easy to develop an addiction to the narcotics that are necessary to manage their pain, but not mom. She relocated to Las Vegas because the climate was more suitable to her condition, and, hey, who doesn't like Vegas baby! With the support of her two close friends, she was a modern day pioneer of how to live through sickle cell anemia. She was active in a local chapter for Sickle Cell. She traveled the world, never met a stranger, and all who came in contact with her would never forget the experience. She celebrated her life, and as you know Life is Art. She embraced that. She was a living example of Art at its Finest!! She loved fashion, artwork, music, theater. She looovedd drama!! Did I say she loved drama or liked to cause drama (Laughs) She loved some good gossip too, but hey who doesn't? Mostly, she loved food, especially if it was yours.
I do have regrets. We were a typical mother/daughter. She didn't want me to grow up and I already thought I was grown, but we still loved each other. As I got older, things between us grew more contentious and ultimately we became estranged. We were both headstrong and wouldn’t bend. On March 3, 2017, I happened to get on Facebook and learned to my horror that my beautiful Mom had died. My family was trying to reach me but my phone was in my purse and I worked late that night. I was devastated! I still am. It doesn't seem real. My heart aches that I didn't get to tell my mom I loved her. She wasn't sick and the woman who helped raise me by being a second grandma were good friends, so she kept me in the loop. She didn't try to force us to mend our relationship but she did suggest it. She was the last person to see her alive because they had dinner and talked for hours. She didn't even know. This is an incredible guilt that I have to live with but I had to tell my mom's story of fearlessness, innovation, strength, courage, long suffering to a long satisfying life. At least long for people who have this disease. Even though I didn't get to say goodbye to the woman who inspired me, I think my mom would approve of this.
I have lived with SCD since birth. I am the youngest of 3 girls, and the only one to get SCD. I was diagnosed in 1986, upon making my grand entrance into this world. My mother didn’t believe I had the disease initially, but with further testing, I was positive for SCD. I can only imagine how it could have made her feel, but she was determined that this wouldn’t make or break my life.
For the most part my childhood was as normal as other children my age, the only difference was that I had an abundant supply of orange juice and I wasn’t allowed to go outside on super-hot or super-cold days. I was always tired a lot after playing, and sometimes my mom forcefully had to make me stay inside while my siblings played with the neighborhood kids.
My crises during ages 4 to 10 were vague but present. I would have instances where I couldn’t breathe after physical activity such as playing with friends, or in gym class at school. Walking long distances was out of the question for me, at that time. During the cold seasons, my lips would turn completely purple sometimes, and the whites of my eyes would have a strong yellow tint to them (I would learn as an adult that this was jaundice, a symptom of SCD). During the warmer seasons, my eyes would clear up with increased natural sunlight exposure, but the heat itself sometimes was just unbearable. Dehydration was always a threat, and my mother always encouraged me to make sure I was drinking enough water.
It wasn’t until puberty that I honestly started to endure more severe symptoms and crisis.
My freshman year of high school, I purposely disregarded signing up for a physical education class. The prior summer I had tried to run with a friend in the summer heat and ended up in extreme pain in my legs. I always got mild chest pains as well, mainly around my heart. I never properly figured out what that was about, but it’s been there my whole life.
As my teen years progressed I would have more crises, and as I aged they continued to become more severe.
I graduated high school and went on to Medical Assistant school, where I would become a learning tool for teachers and fellow students on Sickle Cell Anemia. My blood was used a lot under microscope as a teaching tool for other MA students to learn the difference between someone with SCD and someone without it. It didn’t offend me not even the slightest. In fact it made me happy, that my classmates were interested to know more about this disease. In my life journey I have learned that many are just not educated on this disease. Some people have never even heard of it until they come across it in school or meet someone personally who has it.
I became pregnant at the age of 19, and unfortunately lost the baby to miscarriage. I would later learn that my sickle cell was a part of the reason. My body was just incapable at that time of carrying the baby. It happened so quickly that I never had time to even mourn or think about it. I continued on with my school/work life and tried to maintain my health as best as possible.
I picked up the terrible habit of tobacco smoking, which did nothing but cause my oxygen to begin to drop and caused light dark spots to begin to form on my lips due to low iron. My parents absolutely hated the fact that I was smoking, but I was young and naïve to the fact that this simple trial and error could have cost me my life.
Smoking didn’t last long, and soon, at the age of 22, I would be pregnant again. This time I was careful and working with numerous specialists on top of my OB/GYN, during the high-risk pregnancy. In October 2010, I gave birth to a beautiful little girl. My hematologist warned me that with her father having the SC Trait, and myself having the disease, her chances were 50/50. She would be born with full blown SS SCD (the worst of them all).
It’s one thing to have SCD yourself, but to have a child with it as well, it’s hard. My baby girl went through many 7 to 10 day hospital stays almost every other month. It was hard to maintain work and be her back bone during each crisis. Money would become scarce due to my absences at work and sometimes bills just couldn’t get paid. I thank God for my mother and father’s support because I don’t know what I would have done financially sometimes. I tried applying for Social Security for her but was denied (I guess I just didn’t have enough documentation, although she has been in and out the hospital her whole entire life). I gave up on Social Security after that. I figured it just wasn’t in God’s plan for us, and that maybe it was for the best. I didn’t want my daughter to feel like special case, I wanted her to be strong like my mother raised me to be. I wanted her to fight for her life, the same way I was.
For the most part, I kept her healthy. Routine doctor visits, and I had even joined the local Sickle Cell Chapter to continue to offer her the best care possible. Unfortunately, in the state of Michigan, there are just not enough resources or doctors available with the proper knowledge of this disease. A lot of us who live in this state with this disease literally learn by trial and error, or the accounts of others living with the disease.
My daughter in 2016 had come down with pneumonia. The symptoms were of a common cold, and were treated as such, but she just wasn’t getting better and I feared her sickle cell (as it always did whenever she got sick) would be triggered into a crisis.
I ended up taking her into the ER after I started to hear her struggle to breathe one night. The ER doctor listened to her lungs, and once I told him she had sickle cell anemia disease, he immediately sent her for a chest x-ray. The x-ray came back showing pneumonia developing in her left lung, covering almost 70% of her lung. He told me that if I hadn’t brought her in that night, she would NOT have made it through the night. Her sickle cell had been severely triggered. Her hemoglobin was dramatically dropping, she wasn’t eating, and so she began to lose weight (and she was already small framed as it was, so this weight loss was extremely noticeable). She was admitted to ICU and for 10 days and 11 nights I laid next to my daughter’s bed side, crying and praying to God to not take her from me. The days seemed to feel like forever. By the 4th day in ICU, she was getting worse and worse, the fevers kept coming, she had to keep receiving blood transfusions to keep her hemoglobin up and she began to cough up blood.
I CANNOT describe in accurate words, how I felt as a mother. I was helpless and feeling lost. I was angry because she’s just a little girl, and it wasn’t fair to me that she had to go through this. I thought we were being punished for something. I started to doubt my faith.
I remember one of the doctors on her team, pulled me to the side when I was in one of my crying fits, outside of her room and told me, “I know it seems like hope is gone, but look at you Mom. You’re surviving Sickle Cell because of your mother’s strength and wisdom. She gave those same things to you, for your little girl. I’ll be damned if you BOTH don’t walk out of this hospital hand in hand, in GOOD health!”
I will NEVER forget those words, it was exactly what I needed to hear. And on the 10th day, we were able to go home.
My daughter has just recently celebrated her 8th birthday, and she is a straight A student in the 1st grade. She has the heart of an angel, and you would never know she had this disease or endured all she has until I tell you. She doesn’t remember much from that dreadful 10-day period, and in a way I am thankful she doesn’t. I don’t want this disease to be a curse to her, but rather a tool she can use to maybe…help others.
And as for me, I am 32 years old finishing my Pre-Med degree. I hope within a year to be a practicing Physician Assistant. My goal is to further research and help others with Sickle Cell Anemia.
How can I hope for change and not be a part of it?
This past August, I was admitted into the hospital because of my Sickle Cell disease. I was there for a week and it was a very painful time for me. It took me completely off guard because I had not been sick on that level since 2003. I had been walking in Texas and it had been extremely hot outside. I think that is what set my crisis off. I was diagnosed with my disease when I was 9 years old. Before the diagnosis, everyone told me I had growing pains. Once I got the diagnosis, I worked with several people and some told my mom and dad that I would not make it past 50. So, when I got sick, I started having flashbacks about what the doctors said. It has not been an easy road, even though I am not sick like a lot of other sickle cell patients—but I can say I am blessed. Sickle Cell is part of my life, but it has never stopped me from living.
My name is Kenya G., and my son has Sickle Cell Disease. I knew about my S trait before getting pregnant, but we didn’t know that his father had the C trait until Nicholas was born. He had a fairly normal childhood. Nicholas played sports and did all the things little boys did. Now that he’s an adult, he seems to be in and out of the hospital quite often. Nicholas is now the father of a son who also has Sickle Cell Disease. Nick Jr is an absolute joy and such a happy boy.
One experience I can share about living with this disease is how I suffered from an acute chest syndrome. June 4, 2014, I was awakened by a pain crisis in my abdomen and lower back. I remember waking up and seeing my mom crying as I was being moved to the intensive care unit. I spent my 18th birthday in the ICU wearing a breathing mask. Sun up to sun down and again, every day for almost a month, I wasn’t allowed to eat or drink.
My name is April W. I live with Sickle Cell Anemia type SS. I’m learning to balance the stresses of SCD with being happy in my everyday life. It’s come close to life and death at least 3 times now. The last time was in 2011. My family was told I would not make it through the night. I was put into a drug-induced coma and after 3 weeks I awakened with my right leg gone. I had no idea what I had happened and unfortunately a couple weeks later I lost my left leg as well.
My name is David. I am 35 years old and I have Sickle Cell SC disease. I am the father of 3 children and all suffer from Sickle Cell SC disease. Luckily, I have been able to manage my Sickle Cell since I was 3 years of age. It wasn’t until 2014 that I suffered one of the worst Sickle Cell crisis doctors have seen. I was in the hospital, where I suffered a number of transit ischemia attacks, which left me in the hospital and later in rehab and wheelchair bound.
I was diagnosed with sickle cell when I was born. I don’t remember when my mom told me that I had sickle cell disease, but I remember when I was younger I was always going to the emergency room and kept going in and out of the hospital. As I got older, I had fewer visits to the hospital. I never spoke to anyone about my sickle cell because I thought they would think that I was a diseased child, and I was right. Now that I am an adult living with sickle cell, care is different.
I have sickle cell SS. When I was in first grade I participated in track and field, and being the person I am I tried to show off and be the fastest person and come in first at all of the activities. Then I started to feel weak and dizzy, so I went to the gym teacher and asked for water. He told me no, so I asked my other teacher and she told me to go to the nurse, but as I was walking I passed out. The gym teacher yelled at me to get up because he thought I was faking. He never apologized.
Now that I am in adult care, things are a lot different. Providers at the emergency room don’t understand the pain I’m in with my sickle cell, so I end up waiting 3+ hours or they think that I am drug seeking. One time I had a provider who told me she was concerned for my safety because she thought I would become addicted to drugs and might overdose. She didn’t want to help me. She sent me home after one dose of pain meds. Can you imagine how that made me feel?
I was diagnosed with Sickle Cell Disease at 3 years old and was told several times while growing up that I wouldn't live beyond my 18th birthday. Imagine growing up with that fear and the constant reminder that you're different from others around you. Throughout my life I've had several emergency room visits and 7 hospitalizations. Through it all I've managed to accomplish a lot personally and professionally. Now, it was not an easy task, but I continue to push through for a better future.
I was 21 years old and pregnant with my daughter when I first found out she would have Sickle Cell Disease. There were days when I thought she would not live to see her first birthday. Although she had many life-threatening infections and complications during her infancy and childhood, she is now thriving and is 24 years old! At 10 years old she had a stroke, and ever since she has received blood transfusions once every 4 to 6 weeks. She never let her SCD stop her. She was valedictorian of her college class, went to grad school, and is now a speech therapist. Having the stroke allowed her to feel what it was like not to have control over her own body, and granted her the empathy needed to work with people with developmental challenges. I also became a pediatric Physician Assistant when she was a toddler. SCD has guided us both to paths of success and fulfillment.
At 21, I lost my mom a week before Christmas. Doctors familiar with her sickle cell diagnosis treated her for a crisis without running tests. She was having a stroke. Her final heartbeat changed the trajectory of my life. I'm currently applying to doctoral programs in clinical health psychology. As a health psychologist, my goal will be to change the way Sickle Cell Disease is managed by both patients and physicians alike.
Being diagnosed at 6 months with Sickle Cell Anemia SS, doctors told my mother that I wouldn't live to be 20 years old. I am now 35 by the grace of God. It hasn't been an easy road up to this point, however. I suffered a stroke in the right side of my brain that paralyzed me on the left side of my body. I had to relearn to walk, talk, and speak over the years. Knowing I was different I decided to pursue acting and modeling, which gave me confidence again. Today I have a fashion line for SCD Awareness.
My conditions worsened once I entered middle school. Throughout my early adult life I suffered complications. I still have complications to this day too. Those cells have caused me to have extreme pains when I’m in crises, priapism, severe fatigue, left-eye retinal detachment, vision loss, cataract, and several cases of pneumonia. Frequent emergency room visits and piles of delinquent hospital bills have become permanent shadows over my life. Living with Sickle Cell Anemia has been such a trying struggle for me all my life...being in the hospital weeks at a time…I can remember crying in my hospital bed and wanting nothing more than to walk outside and feel the rays from the sun shine against my skin. Doctors’ restrictions and repeat crises brought on by seasonal climate changes keep me from being able to hold steady employment. I attempt to fight depression by volunteering my free time coaching models and learning studio photography. I have joined my local sickle cell organization for meetings and I’ve taken a lead in raising awareness and educating others on information about this disease in our community. I have noticed a lack of knowledge and attention about Sickle Cell Anemia even amongst medical professionals, as I have been refused treatment and been misdiagnosed with everything from broken ligaments to inflammation to lodged airways more than you would expect from a physician. I’m happy to see this project.
I'm Jew-EL. I'm 30 years old and I was born with Sickle Cell Disease type SS. I had my first blood transfusion at the age of 2. In July 2007, I went into the hospital with walking pneumonia. My fever shot to 108. Both lungs collapsed, and I had to be put a ventilator in the ICU for 10 days. After I got out of the ICU, a virus called Guillain-Barré paralyzed me from the neck down, causing extensive nerve damage. I’m now in a wheelchair, but that hasn’t stopped me from creating a sickle cell community-based organization. #Boldlipsforsicklecell
I want to help spread the word about sickle cell disease and reach out to others who are going through what I go through when living with sickle cell. I would love to share my life story of living with sickle cell disease SS – how I was born with it, how I listened to my doctor tell me that I would never live past my teenager years and if I had kids they would be special. I would like to let them know that anything is possible if you have the good Lord on your side. Because my faith in the Lord is so strong, I'm able to go through life not worried about my sickle cell. I control my sickle cell, sickle cell doesn't control me. Now, I go through life unable to receive any blood transfusions because my body will reject them every time. I spent 3 months in the hospital and wasn’t able to get any blood transfusions. I listened to my doctor come in the room and tell me that there was nothing else they could do for me and I was sent back home with my blood count at a 3. But I never gave up, and 3 weeks later my blood count came back up and is normal all because I never gave up my faith in the Lord. So, thank y'all for letting me share my story living with sickle cell disease SS.
My name is Adreenah Aupril W. and I’m from a small rural town called Apalachicola, located on the Florida Panhandle next to Panama City. I graduated high school as Salutatorian and President of a small class of 55 students. Art, for me, has always been my way to release pain and anxiety. Art gives me a platform to help improve the world, both the people and our environment. A large part of my desire to help others through art is because of my own healing from art.
At the mere age of 4, before spleen removal surgery, I was forced to accept the fact that I battle with a blood disorder called Sickle Cell Disease. This lifelong disease causes numerous complications, one of which is intense pain episodes called Sickle Cell Crises. My cells are shaped like sickles and the cells get caught together in my joints. It causes the intense pain and many times I am immobile. I’ve had my spleen and gallbladder removed, both due to complications from Sickle Cell Disease. The pain and stress from this disease can cause anxiety and depression. My need to cope and survive led me to art. It began when I was a young teenager having issues with the disease. Art was my way to survive reality, using the positive thoughts and energy that radiated from my art. At that time, I was creating sketches for fun and to feel better about my situation. Little did I know, that those sketches would lay the foundation for a new life of possibilities and experiences.
As I began to contemplate all the possible subjects I could major in, I knew one thing for sure: I was certain that whatever I studied would encompass my two loves: art and helping others. Through research, I learned of graphic design, an art form that would allow me to share my ideas and experiences using physical and virtual mediums with the world. I knew instantly that this path was for me. Although it seemed I had found my niche with graphic design, still one thing was missing. I didn’t know how I would use it to enhance people’s lives, until I learned about art therapy. One goal in art therapy is to improve or restore a client’s functioning and his or her sense of personal well-being, which is why I decided to choose the route of art therapy as a career goal.
My journey through college hasn’t been easy. During my first semester in college, my uncle passed away. Within the next year, my grandmother was diagnosed with cancer, blood clots, and a broken hip. I remained at my grandmother’s bedside. The only time I left was to go to class. I look back and wonder how I handled everything and continued to make good grades.
If there is one thing my family has taught me, it is that no matter what you are going through, help others and open your heart and everything else will work itself out.
2015 was the hardest physically, mentally, and financially. While I was dealing with my Sickle Cell Disease, my mother also fell ill during the summer and suffered 2 strokes. Now, my mother is doing better and it’s a daily fight on the road to her recovery. Throughout college, my entire life changed both emotionally and financially. My family is not able to help me as much financially, so I continue to apply for scholarships and funding so I will be able to continue my journey through graduate school.
I’ve always had a part-time job in college, but it is not enough to make ends meet. Many times, I rely on the campus food pantry, and as an undergrad I applied for scholarships or funding opportunities. Unfortunately as a graduate student the only funding opportunities I have available are loans.
August 2017, I received my bachelor’s degree in Graphic Design and Art+Technology with a minor in Sociology from the University of Florida. I'm also working on receiving my Arts in Healthcare certificate at the University of Florida.
I have already begun to harness the power of art and design to make a positive impact in my community. I’ve done this through creating infographic posters to elicit concern about Sickle Cell Disease from the audience.
For my Arts in Healthcare certificate I volunteer in UF Health Shands Hospital, detention centers, and the community, including schools. I help to facilitate oral histories through Shands, where I and AIM writers in residence encourage patients, family members, staff and medical students to explore creative expression through poetry, short essay, oral history, letters, and journal entries. By sharing words, community is created. I also volunteer and facilitate art workshops at Alachua Academy, which is a juvenile detention center for adolescent girls ages 12 to 18.
I am a graphic designer, female, African American, thriving with Sickle Cell Disease. The summation of my life experiences compels me to speak out and represent a voice for those who do not have a voice. My dream is to become a board-certified art therapist focusing in digital design and social justice. I am attending Florida State University to work towards my Master of Science in Art Therapy. It is a 2-year program that also has an optional mental health counseling track that I will be taking. I will have a reduced course load (taking a reduced number of courses each semester but still being considered a full-time student) and will therefore take 4 years to complete the program. I started the program in Fall 2017, but unfortunately, I had to take off from school due to some health issues. I had to have emergency eye surgery. I have an amazing advisor and professors here at FSU who are very understanding. This summer I am taking art therapy courses and will join the new cohort of students in the fall.
I also want to promote personal development and improve quality of life for those with special or extraordinary limitations and I hope to accomplish this through art therapy and counseling. I want to follow my dreams and show that no matter what the circumstance or struggle, you can overcome. I believe that the diversity within myself helps to provide a different dynamic to every group I participate in, and I work hard to be a voice to those who are not heard. I do what I love to help and empower others.
In closing, being able to share my story and inspire others is amazing and keeps me pushing to make my educational dreams a reality. Thank you for taking the time to listen to my story. Again, I’m grateful for this opportunity and continue to keep blessing those who battle Sickle Cell Disease and those who allow us to share our story.
Hi, my name is Marline R. and I live with sickle cell anemia (SS). I'm a 32-year-old woman with a promising future even though I live with this deadly disease. From birth to adulthood, I have been hospitalized over 250 times. At the age of 6, I had a near-death experience when I rode on a train to Disneyland and was overdosed at a hospital where the staff were unfamiliar with sickle cell.
My story is not uncommon. I, like millions of other new moms, experienced how vastly unquantifiable God’s grace and love for us is when I held my son in my arms for the first time. He was truly my everything. I knew nothing about being a mom or about love, if I am to be honest, but as soon as my doctor placed him on my chest and I looked into those big beautiful eyes of his, I promised to love and protect him always. I didn’t know that a few short weeks later I’d get news that would change the trajectory of both our lives forever.
I’d known that I had the sickle cell trait for as long as I could remember, but the only thing that I really knew about it as a young adult was that if I had a child with someone who also had the trait my child could potentially be born with the disease. It wasn’t until a close relative was diagnosed that I understood just how devastating sickle cell could be. But even then, it did not hit as close to home for me as it should have because as a carrier of the trait myself, I still had not put any thought into what that would mean for the children I’d have in the future. For whatever reason, I just could not make the connection.
Three weeks after my son was born, I received a letter in the mail informing me that he tested positive for Hemoglobin SC. I immediately contacted his pediatrician, who said she’d refer me to a hematologist. The earliest appointment was 2 weeks away, so I used that time to read everything that I could find on sickle cell. Educating myself, and later my son, on the disease would prove to be a vital piece to the intricate puzzle taking shape in our lives. I later took him to his first appointment and thus began the first of many, many trips to the doctor. For the first couple of years, it was only routine checks, but late one night, after he’d turned 2, I heard my son’s cries penetrating the darkness and shaking me from my slumber. As I rushed to console him, he threw his arms around my neck and said, “My weg mommy, it hurts.” I couldn’t ask what kind of pain it was because even if he understood he wouldn’t have been able to verbalize it, so I said, “Where baby? Show mommy.” He took his tiny little hand, rubbed it over his left knee and down his leg, still crying and still holding on. I asked if he’d fallen or hurt it somehow and he shook his head no. I lay there for hours rubbing his leg, kissing his forehead, and humming lullabies until he finally drifted off to sleep. The next morning, he was fine but a few months later, the same scenario played out almost exactly as it did the first time. Startling cries, pain in the left leg, and a long night of comforting and soothing until, again, he fell asleep. This is significant because although I knew what a sickle cell crisis was from my research, I did not know that what I thought was an accident that he’d forgotten from earlier in the day was the beginning his first sickle cell crisis. Maybe it was because I was told that Hemoglobin SC (a sickle gene is inherited from one parent and a mutated C gene from the other) is supposed to be a milder version of sickle cell anemia with not as many complications of Hemoglobin SS (two sickle genes are inherited, one from each parent) and since he’d gone 2 years without any complications, I got comfortable and let my guard down.
When my son was 4 and more aware of his body, when he was better able to communicate how he was feeling, when the pains were more severe and lasted for more than a night, I was forced to accept that it was beginning. I was told on his first visit to the hematologist that most kids experience their first crisis by age 5 and even though I had prayed against it, the thing I dreaded most had arrived with a vengeance. My son was hospitalized for the first time right before his 4th birthday. I kept him out of day care because sickle kids are more susceptible to infections. A common cold could and has easily turned into acute chest syndrome for my son, which for him, has always meant a longer stay in the hospital.
Turning 5 was both exhilarating and frightening for me. We had not ever been apart… to say that I was overprotective is an understatement. What if he got sick while at school, what if they wouldn’t know how to get him help, and what if he was in pain but was too afraid or embarrassed to tell someone? The last was most frightening because while in a crisis, the longer you wait to address the pain, the longer you’ll be in crisis. I was proactive. I talked to the teacher, administrators, school nurse, anyone who would encounter my son throughout the day. I provided information about my child and the disease, answered questions, and availed myself by basically being on standby should he need me. In second grade, he was rezoned to a new school and the process started all over again. Everything was fine until one day, I was called by the school nurse. My son was in severe pain and needed to be picked up from school. Our home was literally 2 minutes away. He was perfectly fine when he left home that morning, but when I picked him up he had to be brought out in a wheelchair because the pain was too much for him to stand. Later that night I found out that the pain had started earlier in the day while he was exercising during PE. He did was he was taught, notify someone right away, which was rare. He typically would wait until the pain was out of control before saying anything, so I was particularly proud of the fact that he had advocated for himself. What I was not so proud of was instead of sending him to the nurse, the coach assumed it was muscle fatigue and told him to walk the next lap instead of continuing to run. I was livid because everyone had been told what to do if something like that ever happened, or so I thought. Straight to the school district I went, not irate or disrespectful, but, passionate and determined that something like this never happen to my child or any other within the district for that matter. The district nurse agreed, and together we came up with a contingency plan that they still use to this day. It’s updated every year based on his needs and is distributed to all his teachers. We even came up with a nonverbal way of communicating with his teachers if he wasn’t feeling well. He kept a tongue depressor in his pencil box. One side a smile face and the other a sad face. Periodically, his teachers would give him the thumbs up. If he was feeling well, he’d hold up the smiley face, but if he was in pain or needed to see the nurse, he’d hold up the sad face and he could be excused, no questions asked.
In 5th grade, he was in the hospital during a crucial time for him: STAAR testing. I noticed that he was becoming more and more stressed the longer he stayed, so I reached out to the school. The principal and counselor called him at the hospital and reassured him that he had nothing to worry about. All they wanted him to do was focus on getting better and they’d work with him on re-testing and catching up on his missed work. His English teacher, who still checks on him all these years later, came to visit him and brought two huge cards full of well wishes from all his classmates. That time he had been admitted for a sickle cell crisis but caught a virus while in the hospital and recovery was taking longer. But you know what, he got out, aced his STAAR test, and ended up getting the Presidential Award for Academic Excellence that year.
There’s so many other examples I could give like him spending his entire 7th grade year in a wheelchair due to misdiagnosed stress fractures in both his feet, the depression, the loneliness, the feelings of being judged and pitied, the late night drives to the children’s hospital over an hour away because even though there are at least 5 ERs within 10 minutes of our home, we can’t seem to get adequate treatment for him when he’s in crisis. Why is that? Sickle cell isn’t a disease that affects only a small number of people.
It seems that the battles never end, but none of that changes the fact that 14 years after being blessed with the best son a mother could ever ask for. After getting news that I thought we would not be able to bear, and after each illness followed by recovery, he’s still here and screaming “I HAVE SICKLE CELL BUT IT DOESN’T HAVE ME! And indeed it does not. We will continue to educate, communicate, and advocate until there is a cure. Be encouraged…you’re not in this alone.
My name is Charly R. and I’m from Miami, Florida. I was diagnosed with Sickle Cell SS at birth. All I remembered growing up was having to go to the children’s hospital all the time. I didn’t really understand what it was until I was in high school. During senior high, I was playing basketball. My ultimate goal was to play in the NBA. Unfortunately my dream was cut short. At 17, I had these wounds on both of my ankles that reached the white meat. So my mom took me to the hospital and that’s when I first met my adult hematologist, Dr. Harrington of University of Miami and Jackson Memorial. He explained to me what Sickle Cell was and the complications that occurred with it. In my case, I had leg ulcers and that came from having poor circulation in my legs. So my hematologist notified my coach and told him that I was forbidden to play due to my condition. Since my coach didn’t wanted to be a liability, or face any lawsuit, he dropped me from the team. I was devastated when I found out because I saw basketball as my only way out of the ghetto. I had nothing to live for, no sense of direction, so in my senior year, I dropped out. I was a wild child, living recklessly. One morning I woke up having a prolonged erection. I tried every method to bring it down, such as a hot shower, applying cold packs, and even prayer, but nothing helped. I was so uncomfortable telling my parents what was wrong, but I knew I had to. So they rushed me to a nearby hospital and from there the doctors gave me immediate attention. That’s when I learned I had priapism. So I underwent surgery where they had to drain a lot of blood that wasn’t circulating in my penile area. I ended up with a catheter. It took me about a whole month to recover. Once I was discharged I moved to Atlanta. I needed a fresh start, so I got my GED, then went to college to study IT and I graduated with an Associate’s degree. Overall, the main reason I made that transition was because there is a big hospital downtown, named Grady, that has a 24/7 acute care facility designed for people whose living with sickle cell disease. I can say that it saved my life because whenever I experience a pain episode I can be seen there, and majority of the time they’ll have a bed ready for me. Unlike going to a regular ER hospital, where you have to wait almost a whole day to get seen and then be interrogated just for some relief, the staff at Grady are very compassionate and always serve me fairly as they do with patients with cancer or leukemia. Since being here in Atlanta, I met so many peers who have the same condition as me. I’ve also joined a foundation and gone to educational seminars I never imagined existed. Through hearing so many peoples’ stories on how they cope with the pain, I was compelled to start advocating in the Sickle Cell community through my music. I had a gift that I discovered and started utilizing it in the right way. My smash hit single entitled, “Sickle Cell Survivor!” touched so many people from patients to caretakers, medical staff, and even people that never heard of Sickle Cell but got educated. It made me cry to know that I gave them a voice that needed to be heard whenever they try to shut us up. Today, I’m 32 years old and I’m still battling this illness. By the grace of God, I cheated death several times, been temporarily paralyzed from the waist down, had my gallbladder removed, and been diagnosed with Avascular Necrosis in both legs. I’m STILL standing and able to FIGHT TO LIVE!!
When I was diagnosed with SCA at the age of 8, my parents had never heard of it before and didn’t know what it was. At that same time, they were both diagnosed with Sickle Cell Trait, which explains why I have the disease. Out of the 5 children that my parents had, I was the only one diagnosed with the disease. My pediatrician put me on folic acid and told my mom never to let anyone give me blood transfusions as treatment because my body would become dependent on them. My mom never let them. When I was 24 years old, I was pregnant with my first child and was told that I should get a blood transfusion as a precaution for the baby’s oxygen. I remembered what my pediatrician told my mom about never getting a blood transfusion. I had never had one up to that point; however, it wasn’t just about me anymore. After that I would periodically get transfusions for treatment. A couple of years later I had an aplastic crisis and now I pretty much always get transfusions for treatment. SCD SS is a painful, crippling disease. My main struggle continues to be how I’m treated by the hospital staff when I’m there with a pain crisis. No matter what my history is or what my current condition is or what my chart says, I’m stigmatized and judged by my illness, and it being a predominately Black disease. I’m labeled as a “Sickler” coming in for drugs. Advocacy is of utmost importance for patients. My name is Kathy H. I am 57 years old. I have SCD SS. I am a daughter, a sister, a mother, and a friend. Living with Sickle Cell Disease has made me stronger and more determined to thrive. I graduated high school and completed some college. More recently, I retired from a federal government job after 35 years. I am ready for the next chapter of my life.
Some are born great, and some have greatness thrust upon them! That sums up my life with Sickle Cell. It is not a story without hope, joy, or fun moments. One day I went from laughing and talking to a friend to being airlifted to Johns Hopkins. They worked to save my life from a sickle cell crisis that was also compounded by walking pneumonia. Eleven days later I was out of the hospital, but it would take 8 years to fully recover from the burden the pain put on my bones. I am stronger and a fighter.
I have sickle cell disease (SCD). I went to college twice and received a degree in elementary education and then radiologic technology. I taught in a private Christian school for a year before finishing radiology school and working in a hospital for 4 years. I began having difficulty walking and increased pain crises after working 4 years. I had to leave my job and go on disability after my 4th year as a radiology tech. I felt so depressed for having to stop working at 35 years old. SCD has been painful!
Living with this disease isn’t easy. There are often days where I just want to give up. Just last month I had a kidney infection that was so bad, I had to stay in the hospital for 3 weeks. For a majority of the time, I couldn’t get any pain meds stronger than Tylenol because my blood pressure was so high. It’s a constant struggle fighting your body. It’s exhausting.
Living with sickle cell disease is not easy at all, but I have taken this challenge and not allowed it to discourage me from enjoying my life to the fullest. From experiencing my first of many crisis(es) at 6 months of age to suffering from acute chest syndrome, gall bladder surgery, a tonsillectomy, countless transfusions, and hospital stays, I made it my goal to enjoy every moment with happiness and positivity. Sickle cell shouldn't be feared. It should be brought to light and conquered.
Countless blood transfusions, complete eyesight gone in the right eye, organ failure, and hundreds of hospital admissions—just some of the complications and things I’ve had to deal with as a result of my sickle cell disease. I have received inadequate treatment from health care professionals because they refused to believe how real my pain truly is. They say we’ve developed a tolerance for the pain medicine when in reality, we’ve developed a tolerance to bearing the pain.
Be not defined by that which you cannot change....I live by this because l made my mind up a long time ago that this disease would not define me, limit me, or dictate what l do and where l go in this world. My story is one of being empowered and of turning PAIN into POWER! Like steel being tempered in the fires of a forge, so too is sickle cell my forge, the pain my tempering to be made strong. Strong enough to lift up those too weak to fight, to a place where they too can turn pain into power!
I hate this pain I feel inside but I don't know how to survive without it, I might just die. All I know is pain; I guess I signed up for this. Just want to know, God, why am I stuck with this? Yeah, I want to give up but I don't know how. Yeah, I want to tap out, but this pride won't let me. To be honest, I don't know who I am. I have to try extra, extra, extra hard just to maintain the simplicity of life. How’s that sound? Be gentle with me although I am hard; all this pain left scars that burdened my heart.
My name is Stephanie. My story starts at the age of 15 when I had my first crisis. Funny enough, I never knew I had sickle cell. My mom was told about 2 days after I was born, but she kept it a secret, hoping I would never suffer. I always had a stomach ache and threw up every month as a child, but I did not know why. I found out at the age of 15 because I was hospitalized for my first crisis. I remember the doctor walked in and told me that I have sickle cell disease. I was never the same again, but I'm alive.
Hello, my name is Demetrice. My experience with SCD has been challenging for one. All my life, I thought I had SCD SS, but I don't. I have SCD beta-thalassemia. Now it took them until 3 years ago to tell me. I would like to know why they didn't before. This is why I want to tell my story about my experience, because I want all SCD patients younger than me to know their type of SCD. This is why I want to be part of something to help the younger generation. Thank you for this opportunity. I'm 45 years strong.
Having Sickle Cell SC I always felt stuck between not looking sick enough to the healthcare providers vs being too sick to do what made me feel normal. So, I had the hardest time figuring out where exactly I belonged. The difference was that as a child not looking too sick I was praised, and now as an adult I get called an addict because I don’t look sick enough. I want to point out the fact we are all as different as our fingerprints. Don’t hold me to the book’s standards of who I am.
I was born with Sickle Cell Disease. My mom had never heard of it and was told by physicians that I'd live a short life characterized by multiple hospitalizations, chronic pain, and fatigue. Though they were partially correct, I bet those same physicians wouldn't believe that 33 years later I'm not only living but thriving as a mother of two, a registered nurse, and a woman with enough courage and strength to fiercely pursue her dreams.
My sickle story isn't that different from many other sickle cell patients. I was diagnosed at age 4, so that was a bit late by comparison. Nobody thought to test me early, so I suffered fevers as a baby and pain that doctors dismissed. Once diagnosed, I was started on the medication protocol: folic acid and penicillin. Years passed, and I had one too many pain crises and hospitalizations, one too many surgeries, and one too many near death experiences. But I will not lose this fight.
Hi, my name is Channing P. and I am a carrier of sickle cell trait. I don’t have the disease, but I have the trait. I feel that it is important to share my story because I have to be aware of who I may possibly have kids with one day. I want to have a better understanding of how sickle cell trait is passed on and the likelihood of my children or grandchildren one day developing sickle cell disease. It’s very important to understand both the trait and the disease.
Hi, my name is Jazman G. I’m a 29-year-old mother of one. I was born with sickle cell SS. It’s hard for me because I’m a mother and most times when I want to give up I can’t. Sickle cell is hard because people can’t physically see the pain. I remember a time in school I had a sickle cell crisis and it felt like someone was stabbing me in the back. At times I find it hard to be a great mother because I have to worry about my health. It’s hard, but my son helps me be greatly for life.
I am 35 years old and I live in Apopka, Florida, with 3 beautiful kids age 18, 11, and 7. I found out I had sickle cell disease when I was 16 and pregnant. I remember just waking up one day in so much pain, and I could not walk. I was taken to the hospital by ambulance and they ran some tests. The doctor came in and said you have sickle cell anemia and you are having a severe pain crisis. So, I have been battling this disease since 1999. I have good days and I have really bad days. I thank God for each day I’m above ground.
Hello, my name is Kenneth A. C., Sr and I was born with Sickle Cell Anemia. At the age of 15 I had a major surgery done. As the surgeon and nurses prepared me for surgery I can remember the doctors telling my parents, “If he doesn’t make it, just remember that his life expectancy was 18 years. He’s 15, so that means he has lived his life.” That statement made me decide to take more interest in my physical condition and learn as much about Sickle Cell as I could. I am now 55.
I was born in 1961, the 2nd child out of 5 that my parents had. When I was 8 years old, I remember going to my mom and dad’s bedside and telling my mom that my stomach was hurting. My mom told me to go back to bed and if it was still hurting in the morning she would take me to the doctor. Morning came and to my mom’s surprise, I was kneeling on the floor next to her at her bedside. When my mom took me to the doctor they told my mom that I had Sickle Cell Anemia and would be lucky to live past 21.
My name is Priscilla and I'm 30 years old. Growing up I was always told that my life expectancy is short and I may never reach 30. I believed them especially when my first love passed away of sickle cell disease at the age of 22. I currently hold a bachelor of science in health care and would love to pursue a master’s in the same field. It can be challenging to be a student, or even have a job when you are always in between hospital stays, or having pain crises.
Generation S member telling their story.
Generation S member telling their story.
Generation S member telling their story.
Generation S member telling their story.
Generation S member telling their story.
Generation S member telling their story.
Generation S member telling their story.