In regards to health awareness September is a busy month, and just like a recent post I wanted to bring more awareness to sickle cell disease. When I think about the question “why bring awareness to sickle cell disease” I remember quite vividly my first experience dealing with a patient who was suffering during an acute pain episode. It affects nearly 90,000-100,000 americans and despite being recognized since 1983 still seems to be a disease that it not very well understood by most physicians.
I remember my first experience as a medical resident with a sickle cell patient. It was a young kid who was in excruciating pain but unlike my other patients who may have broken a bone or had some type of trauma this patient “looked” fine on the outside. For the first time I couldn’t point out what was wrong with my patient but I knew that he needed my help. Unfortunately, I seemed to be in the minority because my attendings seemed to think he was just a pain seeker who couldn’t be in as much pain as he claimed. It was the first time that I took the reigns and served as my patient advocate despite the wishes of my attending and ever since I grew an affinity for the disease.
What is Sickle Cell Disease?
Sickle Cell Disease is a genetic disorder, meaning that it is passed to children from their parents. It is the most common inherited blood disorder in the United States and affects 1 in every 500 african americans and 1 in every 36,000 hispanic americans. Sickle cell disease is a recessive disease meaning that both parents need to have the gene for their child to have sickle cell disease. This is not to be confused with sickle cell trait which means that you are a carrier of the disease but you don’t have any of the symptoms as a person with full blown sickle cell disease has. The great issue with sickle cell disease is that it causes your blood cells to be an abnormal shape which causes the symptoms they especially the pain crises.
Sickle Cell disease is a chronic lifelong disease that requires a collaborative effort with primary care physicians, hematologist and other specialities. Because of the prevalence of this disease in the african american community I believe that it is important that physicians recognize the signs and symptoms and be able to correctly treat the pain adequately. We do our patients a disservice when we don't recognize problems early.
When I think about my patient during residency who was in the hospital bed clutched in pain and how even though he was in a hospital he seemed to have no one who WOULD help him I am glad that I was there and most importantly that he would change just how I see any patient with the disease for the rest of my life.
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How can you help?
These are just several organizations that provide support & care in regards to those affected by Sickle Cell Disease. Even though the month is coming to an end I challenge you to support your local sickle cell associations. You don't have to wait till September to show them the support they need.