My hematology rotation in Med School was one I never particularly enjoyed. You always had this sense of inevitability; that no matter how good the treatment was, you could always be sure of two things: the patient would die an early death, and there would be a great deal of pain, grief and sorrow leading up to that end.
I will never forget the day a friend and I visited a family that had just lost a child to sickle cell disease. The grief was palpable. The mother’s cries still haunt me to this day. I remember weeping bitterly myself, and asking my friend why a good God could let this happen to an innocent child. I’ve since learned not to wonder about such things…and to keep my emotions in check, as so many other medical doctors before me have had to do.
Fortunately, I haven’t had to deal with sickle cell disease patients since then…that is, until about six months ago.
Quite frankly, sickle cell disease (SCD) was not on my radar at all. As you know, we were simply focused on neurological/mental health disorders…on how to improve brain health in children whose brains had been damaged by an event earlier on in childhood (or during fetal development), such as birth trauma, seizure disorders, meningitis, etc.
Then children who had suffered multiple strokes as a result of sickle cell disease also started showing up at our free clinics. While our interventions improved the health of such children, it took a lot of resources, and even then, the results were hardly what one would call dramatic. Most times, they were simply able to just “sleep better,” or were “looking better” according to their parents. However, in terms of their actually being more functional, we didn’t see much of that, which quite frankly, was rather disappointing.
After a few months of therapy and seeing these minimal improvements, the thought occurred to me: why didn’t we try addressing this condition before they got to this stage? In other words, was there anything we could do to reduce the severity and frequency of crises in these children so they didn’t have to suffer such debilitation?
Based on that thought, we began to reach out to hospitals and sickle cell disease support organizations around the country to send us patients. And lo and behold, we found that there was actually a lot we could do…at a fraction of what it took to help the stroke patients.
And thus began our “foray” into the world of blood disorders.
The fact that Nigeria has the highest number people living with SCD in the world, and that most of these sufferers do not have access to standard medical care – indeed, our experience has shown that even those fortunate enough to be born to middle income families still suffer repeated crises and die at a relatively early age, even with access to medical care – constitutes an ongoing medical disaster, in my opinion.
I believe it calls for a different, more inclusive approach to addressing the condition. Quite frankly, if all we have in our arsenal for dealing with SCD are painkillers, folic acid, antibiotics, anti-malarials, hydroxy-urea pills and blood transfusion, then we are hopelessly out-gunned.