One of the saddest things that I read about recently, was the story of 2 young black sisters with sickle cell disease, who both suffered strokes. (See the full article here.) The suffering of these girls is so frustrating because these strokes are 90% preventable.
The younger sister, who is currently 12 years old, had a stroke in 2015 and 2017, and still has a lot of residual effects from the strokes.
Sickle cell disease occurs in those of African descent. It’s a genetic disorder that affects how red blood cells develop. Their blood cells take an abnormal sickle cell shape, and these red blood cells die early and get stuck in the blood vessels, literally clogging blood flow. It can cause excruciating pain syndromes that can last for days, and when blood flow is clogged- you know that’s not going to be good. Sometimes these pain crises can occur multiple times per year, requiring hospitalizations. These children are in so much pain that they can’t even scream or move.
Medical guidelines recommend that an annual ultrasound screen be performed for children with sickle cell disease, in order to detect those at high risk for stroke. AND medical guidelines from 2014 recommend that all children with sickle cell disease take an inexpensive generic medication to prevent the irreversible damage to organs and the brain. But this DOESN’T happen MORE than it happens. The question is WHY?
Dr. Francis Collins, who is director of the National Institutes of Health, said the lack of attention paid to this disease historically “is one more reflection of the fact that we do not have equity in our country.” When is it enough?