Why Aren’t We Hearing More About The Potential Cure For Sickle Cell?

September 29, 2015  |  

There’s some fantastic medical news I’m sure you’ve heard absolutely nothing about, but that deserves your attention.  Sickle cell, the inherited disease that primarily affects people of African descent and roughly 1 out of 500 African-American births in the U.S., may finally have a cure.  Not a promising lead or progress in research, but an actual, physical cure.

When I discovered this news through my Twitter timeline, I couldn’t believe it.  It seemed to have been posted and referenced nonchalantly as if we live in a world where cures for serious illnesses are found every day.  Granted, the number of adult patients who have been cured of the disease and treated at the University of Illinois Hospital & Health Sciences System where physicians performed the lifesaving stem cell transplant is only at 12. But these men and women are at the forefront of what will hopefully be a widespread process to rid the world of sickle cell anemia.

If you weren’t aware, sickle cell is a disease in which a carrier’s red blood cells are crescent-shaped instead of round.  This irregularity is the reason less oxygen gets to tissue in the body, which results in abnormal hemoglobin and can lead to kidney and liver problems, strokes, and other serious complications.  The severity of the disease varies from person to person, but it is a lifelong illness that only 40 years ago equated to a lifespan of 14 years.  Today, the average lifespan for those with sickle cell is 40 to 60 years.  Now, thanks to stem cell transplantation, life expectancy should increase significantly, especially for children who get the transplant at a young age.

But for adults like my cousin, this possible remedy comes after many years of being in and out of the hospital due to sickle cell flare-ups.  Blood transfusions, countless trips to the emergency room, bouts of extreme weakness – to say sickle cell has taken a lot out of him, physically and mentally, would be an understatement.  Not only are his outbreaks unpredictable, but they are also extremely painful.

Having a potentially debilitating disease you can’t control that can knowingly shorten your life expectancy does something to a person. Therefore, I understand my cousin’s skepticism about the new stem cell transplant procedure, which is chemotherapy-free, unlike previous bone marrow transplants that required chemo and left patients with already weakened immune systems susceptible to infection.  Originally developed by the National Institutes of Health in Maryland, this new transplant procedure has only been in practice since 2011 but was just validated through a study by the University of Illinois at Chicago.  Few adult patients have undergone the procedure.  It also requires healthy donor cells from siblings with matching tissue. Unfortunately, my cousin is an only child.  And according to the NIH, many people are either “too old for a transplant or don’t have a relative who is a good enough genetic match for them to act as a donor.”  This could be troubling and a potential setback, but I am positive and hopeful about the progress that has been made so far.  I don’t know what my cousin will choose to do in the future, but he has me and plenty of other relatives who could be potential donor matches.

This potential cure for sickle cell anemia is not deemed sensational.  Nor is the news about it moving about widespread. But it is transformative and potentially lifesaving.  In an age where billions of dollars are being poured into research, medication and the development of potential cures for countless diseases, this is inspirational.  It lends hope to scientists, doctors, and especially patients.  The number of cured sickle cell patients will undoubtedly increase, especially as the procedure is advanced.  And I pray that my cousin will be one of those patients in the near future.

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