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A couple of years ago, I was home for Christmas with my parents and both my brothers. One of my brothers came in agitated; he read an appeal for blood donors on Twitter. This appeal was for a patient with sickle-cell disease.
We all got worried and concerned because the description fit someone that was dear to our hearts. We immediately began to make phone calls, but we could not seem to reach anyone or find out what was happening. All we knew was this person, this friend of ours, was also in hospital.
After two days of frantically making phone calls and praying, we got the news. Our dear friend had passed.
It was a very somber Christmas for us at home. I can say that every single one of us was heart broken. This was the first person my brother knew that passed from sickle-cell disease. For me, it was the second.
The Sad Facts About Sickle-Cell Disease
Every year, about 300,000 infants are born with sickle-cell disease (also known as sickle-cell anemia) and 200,000 of these are born in Africa! According to the CDC, there are approximately 100,000 Americans suffering from sickle-cell anemia and many more that are not on record.
More Facts from the CDC
- Sickle-Cell Disease (SCD) occurs among about 1 out of every 365 Black or African-American births.
- SCD occurs among about 1 out of every 16,300 Hispanic-American births.
- About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).
- People with SCD have less access to comprehensive team care than people with genetic disorders such as hemophilia and cystic fibrosis
The mortality rates are ridiculous because up until now, there’s been no cure for SCD.
Finally, A Cure?
One of the things that has baffled me is why there has been no cure for SCD. This disease has been around for at least 60 years (that is the age of the oldest sufferer I personally know). So why no cure?
I might never know the reason for that, but the good news is, there might be a cure.
An article published on the New York Times recently gives us hope. According to that article, scientists have been working on a cure. Several strategies have been tested to correct this sickness at a genetic level. And there have already been cases where patients enrolled no longer show signs of the disease.
Bitter Sweet News
The news about the cure for sickle-cell disease is bitter-sweet. If only our friend had been part of this study, maybe he would still have been with us. But it is emotional to know that others might get a chance to get cured of this debilitating condition.
No one should have to suffer from that illness. It is soul destroying. And knowing that in a few years to come, no one will have to suffer from it, is just wonderful. My dear friend will be content, where he his.
Want to know more about sickle-cell anemia? Visit the sickle cell diseases coalition website for more information.
Have you ever lost anyone to SCD? How did you cope with the loss?