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We Need to Talk About Sickle Cell Disease and Reproductive Health

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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.

Getty image by The Good Brigade.

Originally published: January 26, 2022
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