The Race Against Sickle Cell Disease

It is time to win this race!

A Race to Win

David Yon, September 8, 2019

This Saturday, September 14, I plan to run as fast as I can at the 38th edition of the Run for Sickle Cell 5K.  After all, this race is about helping people deal with living with Sickle Cell Disease and promoting the search for a cure for the disease. You may smirk at my illogical belief that I can impact the timetable for finding a cure for Sickle Cell Anemia by running fast but hear me out.

While Gulf Winds and the Sickle Cell Foundation have always worked together on this race, 3 years ago the bond became stronger, with the idea that the closer the two organizations worked together the faster the goals of the foundation can be accomplished. A flat, fast 5K is a huge draw for runners. So, it makes complete sense to me that we do it quickly.  And a flat, fast course that produces fast times for participants is even better.

Last year I wrote the following statement for this column:

There is no cure for most people with sickle cell anemia, but treatments can relieve pain and help prevent problems associated with the disease.  And, you won’t be surprised to hear me say that a good exercise program will help as well.

It is a diagnosis no one wants to hear: “You have an incurable disease.”  Whether it is Alzheimer’s, Parkinson’s or many forms of cancer, “incurable” crashes down on a person in a devastating way. Unfortunately, that is what patients have heard immediately after being diagnosed with sickle cell disease by their doctors. There were a few exceptions, but historically a diagnosis of Sickle Cell Anemia meant a life cut short and filled with many painful symptoms. 

While scientists generally know what causes Sickle Cell Disease, finding a cure has been a difficult path.  Like many diseases funding is inadequate despite the fact that more than 200,000 people in the United States and 20 million worldwide have the disease and, around the world, millions die each year as a result.  Sickle cell disease is a crippling ailment that generates a lot of suffering. It primarily affects those who have African ancestry, but it also occurs in people who have a Hispanic background. The disease was first described in the US in Chicago in 1910, in a dental student, by Dr. James B. Herrick who coined the term “sickle-shaped” to describe the peculiar appearance of the red blood cells of this patient.

It is hard to say that the “race” to find a cure has been fast, but it has been steady and there have been some very dedicated people trying to unlock the doors to curing people with the disease.  There has also been a lot of progress reducing the impact of the disease on patients. And at some point “steady” becomes “breakthrough.” Which is where we seem to be today. And in the last year I think it is fair to say things have moved quickly. More than once headlines have blast messages like “Scientist on verge of curing Sickle Cell Disease.”  Or headlines that about patients cured in clinical trials. The New York Times printed a story about a family that watched the oldest daughter slowing give into the disease and die.  Her younger brother, Brandon Williams, is going now going through gene therapy and seems to be on his way to being cured after suffering 4 strokes before the age pf 18.

Because sickle cell disease is the result of a very specific genetic defect, the most promising treatment for curing the disease seems to be gene therapy. It now seems possible to repair or change the gene that causes sickle cell disease to occur. And that is just what seems to occurring in clinical trials. Researchers involved in one gene therapy clinical trial were able to make sickle cells switch back to normal.

Another great success has been to use of stem cell transplants.  A stem cell transplant replaces the diseased blood-forming stem cells of a patient using healthy stem cells from a donor.

It is all enough to start the body pumping adrenaline. And a runner to try and run fast.  Before it gets away from us lets go close the door on this disease and put in place the mechanisms to eradicate it.  I hope to see you Saturday morning at Jake Gaither Gym!

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