Sickle Cell Disease

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    Abayomi Afolayan

    How Sickle Cell Disease Impacted My Career Choices

    People  living with chronic pain understand that pain does not end in your body. It affects every other aspect of your life. Sickle cell disorder has affected different aspects of my life over the years, and this includes my career choices. There are quite a number of widely accepted triggers for sickle cell pain and stress is one of them. In my case,, emotional stress impacts me so much more than physical stress. As someone with so many passions and interests, this makes pursuing my dreams complicated. For instance, at a point in my teenage years, I found a passion for playing basketball. I really enjoyed watching it and I wanted to see if I could play it too. With sickle cell, I knew it was going to be tough, but I had high hopes and wanted to give it a try. I mean, why not just try instead of limiting myself? It didn’t take long for me to get ready and join a local basketball team. Every evening I went to the basketball court and soon I began to train. The training usually lasted  one to two hours and made me realize basketball can be one of the most stressful sports to play. There was no opportunity to rest and you’re always running up and down the basketball court. Unfortunately for me, sickle cell anemia meant I could only play for 20-30 minutes at a time. After that, I got too tired and fatigued. Sometimes, I started to feel dizzy or feel a slight headache because of dehydration. At that point, I knew I had to take a rest. In less than two months, I had to quit because I was having frequent pain, especially in my thighs. That was how sickle cell disorder stopped me from playing basketball. Although I was sad, I didn’t let that stop me from trying out other things I was interested in. Modeling was another thing that caught my interest – my dream was to walk on runways as a fashion model. I wasn’t big and muscular like the models I saw on television and in magazines. Thanks to the delayed growth complication that comes with sickle cell, I was exactly the opposite. It took a lot of research and a mindset change to convince myself that there is more to modeling than the fashion models I saw in the mainstream. As I was ready to kick off my modeling career, I started to feel an awkward pain in my left hip. At first, I ignored it, but later the pain got worse.  I had to put my modeling pursuit on hold and focus on getting better. Later, I was diagnosed with a sickle cell complication called avascular necrosis. Avascular necrosis is the death of bone tissue due to a lack of blood supply. This is common in people living with sickle cell disease and it usually occurs in the joint. Avascular necrosis affected the top of my left femur and in less than two months, it became difficult for me to walk without feeling pain. I started using a walking aid to reduce weight on my affected hip. It became obvious that my modeling career was fading away as I started to limp.. Did I quit? No. I made the decision to try one more time despite my disability. The decision was one of the toughest I have ever made. Having to go to auditions limping with a walking aid was one of the scariest things I have ever done. I remember limping to one particular modeling audition, and it was as though all eyes were on me and my leg. I managed to pull myself together and get through the audition. Even though I was not contacted, I felt successful. After the audition, I decided to put my modeling career on hold until I could get hip replacement surgery, which is the solution to avascular necrosis. After all these career choices didn’t pan out, I had to find ways to make money from home. It was the only stress-free way  I could think of and it allowed me to rest my hip just as my doctor advised. If the unpredictable nature of sickle cell disease has taught me anything on my career journey, it’s to always take prompt action. Every moment is precious and you should do what matters most to you right now. You have no idea what can happen in the next minute, and should cherish the days that you feel your best.

    Abayomi Afolayan

    How Sickle Cell Disease Has Impacted My Life

    Every person living with sickle cell disease will tell a different story about how the condition has affected them, and I’ve learned over the years that sickle cell disease impacts everyone differently. Sickle cell disease is a hereditary disorder that is inherited from both parents who have the sickle cell trait. It is a blood disorder that causes the red blood cells to become misshapen and break down. This change in the shape of the red blood cells causes the red blood cells to clog up and obstruct the flow of oxygen, which then causes pain or other complications to the affected area of the body. Many people associate sickle cell disease with this pain, but there is more to sickle cell disease than that. My first sickle cell crisis In 2016, I was preparing for my first exam at my university, and I was excited and nervous. The pain started as a minor ache in my lower back, which I ignored because I thought it would get better if I just rested. I took a nap, which was interrupted when the minor ache had become more intense. It became a hammering pain in my lower back which gradually moved up my spine. I could barely walk; I could only make it into the hospital by leaning on my parents for support. It was around midnight, so everywhere was silent and calm, but I could feel and almost hear the pain slamming against my ribs. When I was seen, the nurse decided to give me a medication that calmed my nerves and sent us back home so that I could relax and sleep. But then later that night, the pain came back worse than ever. I was in tears, and returned to the hospital where I was admitted to get better care. My red blood cells had become so clogged up they had stopped blood flow from reaching the muscles in my black. This is an incredibly painful medical emergency called a sickle cell pain episode or crisis. I am grateful that I have a good relationship with my doctor who is also a sickle cell disease advocate. That way, if I ever do go to the hospital, I know I have someone who’s on my side. Fortunately, they are rare for me, and I haven’t experienced one since. However, even though I don’t have these pain episodes often, I have dealt with other complications of sickle cell disease. Self-denial and sickle cell Growing up as a child with sickle cell, I lived in self-denial. A lot of things contributed to this, and one of them was the information I got as a child with sickle cell disease. As a child, I was led to  believe that people living with sickle cell are always in the hospital, and there weren’t many options for help. However, I later found that scenario wasn’t true for me. In fact, I didn’t miss school because I was admitted and I didn’t have much pain so it was difficult to accept that I was living with the disease. This self-denial attitude made it difficult for me to find where I belonged. I found it difficult to advocate for myself and tell people how sickle cell was affecting me or how I wanted to be treated. It took me a lot of years and connecting with the right people and information to become educated about the different ways sickle cell impacts those who live with it and the different ways that the condition can progress. It was only after I increased my knowledge of sickle cell disease that I began to come to terms with the fact I was going to have to break out of my denial and deal with the fact that I was living with this condition. How sickle cell has impacted my body and my life The first sickle cell complication that I had from sickle cell disease was delayed growth and anemia. Because my red blood cells aren’t made like typical red blood cells — they are sticky, inflexible, and the wrong shape — they get tired quickly and die sooner than normal. The normal red blood cells die within 120 days but in those with sickle cell disease, red blood cells die within 10-20 days. This means that there is a shortage of red blood cells. The shortage causes anemia and delayed growth. I was the smallest kid among my peers, which caused me to feel insecure about my body and become socially withdrawn. It was difficult building a relationship with others because I thought people would think of me, and I always felt like I was being judged because of my size. So, I avoided socializing with others. The bullies in my school didn’t make it any better for me. I felt powerless to stand up against them because I knew I couldn’t physically protect myself. In addition to the impacts on my stature and mental health due to bullying isolation, sickle cell also caused me to have anemia because my red blood cells can’t carry enough oxygen to the tissues in my body. Due to anemia, the whites of my eyes have a yellowish-tinge, my skin looks pale or gray, and I experience a lot of fatigue. I could not partake in many school activities because of the fatigue. I used to play football in the compound with my neighbor and my older brother and I always get tired first and fast. Some days, it gets so worse that I can’t even find the strength to get out of bed. Despite the challenges I faced as a younger kid, I met some great friends as a teenager who helped me better understand myself and feel more accepted despite a sickle cell disease diagnosis. Today, I’m 24 years old and although I still struggle with sickle cell disease, I have found that the experience has taught me empathy and compassion. I never hesitate to help others because I understand what it’s like to struggle and experience pain. If you’re reading this and feeling overwhelmed by the diagnosis, know that you’re not alone. It took me a long time to realize for myself that sickle cell disease does not have to define you – get to know yourself, what you love and what your passions are. There’s more to you than sickle cell disease.


    Changing the Narrative for Others Living With Sickle Cell Disease

    In April 2020, I lay in a hospital bed in Atlanta, Georgia, while fighting for my life. Unlike many other patients in the hospital, I wasn’t struggling with the terrifying and then-mysterious COVID-19 virus — my terror was much more familiar. I’ve lived with sickle cell disease (SCD) for my entire life and have come to rely on life-saving blood transfusions when my symptoms become severe. But the pandemic caused a nationwide shortage of blood donations and doctors told me that there was no blood available to give me. I was blessed to eventually receive a transfusion, but this incident left me determined to do my part to make sure that other sickle cell warriors don’t experience the same problem in the future. In people with this rare genetic disorder, the red blood cells form in a sickle shape instead of round. As a result, they are not able to transport oxygen throughout the body efficiently. Those with sickle cell disease can develop a number of potentially life-threatening complications including anemia, severe pain crises, infections, strokes, and organ damage. The common perception is that SCD is only experienced by people of African descent, but the disease is also seen in Hispanic, Asian, Middle Eastern, Indian and Mediterranean populations. There are treatments available to address certain symptoms of sickle cell disease, but no medications have been approved to treat its genetic root cause. Aside from pain medication and IV fluids, blood transfusions are one of the only treatments that mitigate my vaso-occlusive crises. Since being diagnosed with sickle cell disease at 6 weeks old, I’ve lost count of the complications I’ve experienced due to the disease. My first vaso-occlusive crisis (when the blood flow to an area of the body is blocked by a buildup of sickle-shaped blood cells stuck in the blood vessels) occurred when I was 3 months old, and I had additional crises about four times per year throughout my childhood. They each caused me unimaginable pain. I have experienced liver failure resulting from gallstones, avascular necrosis, and transient ischemic attacks (TIAs), which are stroke-like attacks. One of the most difficult aspects of having sickle cell disease is making decisions regarding my health. With no “cure” available for the disease, every medication or treatment option comes with potentially serious risks. I began taking hydroxyurea, a chemotherapy drug that is frequently prescribed to people with SCD, when I was about 16 years old. However, the medication is known to have devastating effects on patients’ reproductive systems. Even blood transfusions have side effects. I have worked with my medical team to manage the excessive iron in my body because if left untreated, it can cause liver disease, heart problems, diabetes, and other potentially life-threatening conditions. Some people with SCD eventually undergo stem cell transplants, but these are incredibly risky and not guaranteed to be successful. I hope that sharing my story contributes to multiple conversations in the sickle cell disease and broader rare disease communities. I am one of the many sickle cell warriors that rely on blood transfusions for survival, and my goal is to remind those who are able to make donating blood part of their regular routines. When people hear about my experience, they often feel helpless and want to know if there is anything they can do. Becoming a blood donor is one of the best things anyone can do. I think it’s important for sickle cell warriors to make it known that we are not satisfied with the current treatment options available to us. We have to do our part to push research forward by sharing our experiences so others understand how serious SCD is. Clinical trials that are in progress give me hope that our community will soon have access to a safe and effective treatment that does not interrupt our daily lives. I am determined to see the day when our struggles are spoken about in the past tense.

    Community Voices

    How are you honoring Rare Disease Day?

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    SC RED Supports Reproductive Health of Sickle Cell Disease Patients

    Along with jumping rope and playing on playgrounds, some of my earliest childhood memories were made in hospitals and hematology offices. Like many children living with sickle cell disease (SCD), I was diagnosed with the condition shortly after I was born. I recall meeting other kids who had SCD at doctors’ offices, but they always seemed so much sicker than I was. I experienced bouts of pain known as “crises” and received blood transfusions, but these occurrences were infrequent. I felt like a “normal child” until I was a teenager and began experiencing life-threatening complications. These hardships eventually inspired me to discover my mission in life when I founded The Sickle Cell Reproductive Health Education Directive (SC RED) in December 2020. Sickle cell disease is a rare genetic disorder that causes the red blood cells to form in a sickle shape. Their malformation results in their inability to transport oxygen efficiently throughout the body. Those living with the condition can experience a wide range of complications as a result including infections, severe anemia, pain crises, strokes, and life-threatening organ damage. The disease is most commonly seen in patients of African descent, but it is also prevalent among Middle Eastern, Asian, Indian, Hispanic, and Mediterranean populations. Treatments are available to address certain symptoms of SCD, but there are no approved medications that target the genetic root cause of the disease. Like many people with sickle cell disease, my condition deteriorated over the years, and by the time I was 18, my doctors recommended that I undergo a bone marrow transplant in an effort to give my body the ability to produce the healthy red blood cells of a donor rather than my own. Even though the bone marrow transplant was my only chance at having a life free from sickle cell disease, the decision to move forward with the procedure was an extremely difficult one. Moving forward with the transplant would mean delaying college and beginning a month-long hospital stay so I could receive strong chemotherapy and radiation treatments that would eliminate my immune system. I was told that I would lose my hair and could experience life-threatening infections and side effects during the transplant preparation. What concerned me the most was the fact that the chemotherapy drugs I needed would very likely leave me infertile. I dreamt of becoming a mother from a young age and the thought that I wouldn’t be able to become pregnant scared me. Many people who face infertility as a side effect of chemotherapy and other medications turn to fertility preservation technologies for assistance. I decided to research these options as I prepared for my transplant, but quickly learned that my health insurance wouldn’t cover fertility preservation because I did not have cancer. I couldn’t afford to pay for the procedure out-of-pocket, so I moved forward with the bone marrow transplant without freezing my eggs. I was devastated when after going through the grueling transplant process, my body rejected the donor bone marrow. After surviving this serious complication, I felt inspired to advocate for other sickle cell warriors like me who wanted to have families one day. While there are over 250 sickle cell disease advocacy organizations in the United States, SC RED is the first to focus solely on reproductive health. With the help of a team of clinical specialists, lawyers, ethicists, and industry partners, I hope that our organization can bring attention to the importance of conversations between people with SCD and their doctors about reproductive health. Our goals are to distribute a reproductive health curriculum to people living with SCD via hematologists, OB-GYNs, and sickle cell disease care centers as well as establish support groups and provide grants to help patients access fertility preservation technologies. We are determined to make fertility preservation more accessible to people with SCD and sponsor research to close knowledge gaps related to SCD in the medical community. When SC RED was established, I never could have imagined how far we would come in a year. We’ve already established official partnerships with Be The Match and other important advocacy organizations. We’ve recruited some of the brightest minds to join our board and committees. One of SC RED’s cofounders and I were recently invited to speak during the Sickle Cell Disease Association of America’s Annual National Convention at the Charles F. Whitman, MD Memorial Lecture. We spoke about how our personal and professional experiences inspired us to develop SC RED. This was the first time the lecture was given by a patient. Despite the challenges sickle cell disease presents, it has made me grateful. I’m grateful to have found my life’s purpose because of my diagnosis. I’m grateful to have survived numerous complications and I’m grateful that many people with SCD are living into adulthood and are healthy enough to plan to have their own families. I’m grateful that there are other people like me who are determined to make life better for those with SCD. But with my gratitude comes determination. Research is progressing, drugs are in clinical studies and important conversations are occurring surrounding the struggles our community faces, but I plan to continue my work until everyone with SCD has access to treatments that allow them to live the full lives they deserve.

    How Sickle Cell and Social Justice Go Together

    Pain is the most common symptom for a person living with sickle cell disease. However, it is often the first thing people don’t believe patients about. Some medical professionals are convinced that the pain is all a delusional cry for attention and pain medication. I believe they are clearly not qualified to make that diagnosis solely based on coming into a hospital room and judging how many tears a sickle cell disease patient does or does not shed. I believe it is much deeper than just thinking of people with sickle cell as “drug seekers.” In a conversation with a psychologist, who also lives with sickle cell, I learned that some medical professionals are told not to qualify sickle cell patients as a life worth saving, because some doctors believe most sickle cell patients are on disability and considered a waste of space for needing the state’s assistance. This is a social injustice. How can we be judged for an illness we were born with? Sickle cell patients didn’t ask for this, it was the life they were given. Be that as it may, it is the life we have that more than qualifies us to be our own boss. Many living with sickle cell have a hard time maintaining a job when they go to work for companies, because there are very few people willing to understand the two weeks you need off to get treatment at the hospital and the other week to recover from pain and withdrawal from pain medications. This is why some choose entrepreneurship as a career path. Patients are tired of the misconception that they are not worth the trouble of being treated like normal human beings. Another issue is the superficial expectation of what people consider a serious illness.“You don’t look sick.” How many times have patients struggling with sickle cell heard those heart-dropping words? This is an invisible illness and a silent killer to some because of those expectations to look exactly how they feel we should. On the other hand, sickle cell patients should also look at the role they play. There are some sickle cell patients who are judged based on the actions of others. Although it is not acceptable to be treated like the last patient who left a bad impression on the medical staff, the entitlement of some patients that come into the hospitals may also contribute to the judgment by the medical staff. Of course, this is just based on previous experiences with being treated unfairly, but this illness is not well known to all professionals. When they ask for a patient’s help or for an opinion to better understand the illness they are faced with treating, it would help to educate them or connect them with an advocate or doctor who can help achieve a better understanding of treatment for all patients they come into contact with who are dealing with this condition. Being dismissive of those who are uneducated only creates a bigger problem. The reoccurring issue of bias against patients will persist. The prejudice goes both ways in some cases. A patient may think the problem is a race issue instead of a miscommunication that sometimes can be resolved with compromise. The problem with some medical professionals is their belief that sickle cell patients are threats to their medical licenses instead of people who can provide knowledge about the disease. Not only the tone about sickle cell awareness, but the conversation itself needs to change altogether. Sickle cell patients must first start by educating and empowering themselves. Acknowledge what the problem is and if you are able to help be the solution. Patients know what hospitals are actually hot zones, meaning they more than likely will receive less than adequate care. If you lack the time, patience or general connections to make the necessary changes at that specific hospital, then change the hospital you choose. Travel a little further to a hospital you know will at least follow the NIH guidelines. If you are not aware of the NIH guidelines please make sure you review them and print them for your records. Sickle cell patients should also be aware of their hospital’s patients’ rights and responsibilities, so they are able to identify when they are being treated above or below hospital protocol. Sometimes a patient can do all these things and still run into problems beyond their control. Shatter those limitations and the preconceptions of medical professionals, and there is hope for change.

    Community Voices
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    World Sickle Cell Day & Juneteenth 2021
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