Dear Kathleen Sebilus, Mr. Joshua Dubois, Mr. Kareem Dale:
While there is a significant population of people with Sickle Cell Disease (SCD) in the United States, the worldwide numbers are staggering and increase significantly into the millions. In Uganda alone, 25,000 children are born with SCD each year. In Ghana, 16,000 children born within the last three years have SCD. The disease is not only found in Africa – it affects significant portions of Mediterranean, Latino and Indian populations. It is even one of the most prevalent genetic diseases in the United Kingdom.
I have a special interest in promoting awareness of this deadly disease that affects 1 in every 400 African Americans. It is a disease that has been overlooked from the national spotlight; in fact, many people believe it has been cured. Although childhood mortality from SCD has dropped and recent clinical trials for bone marrow and stem cell transplants hold promise for an eventual cure, today the average American adult with SCD only lives into their forties.
The burden of being a caretaker of someone living with this disease is often compounded by its “invisible: nature, by the inability of family and friends to comprehend the unseen pain and the seemingly random episodes. My determination to raise awareness of Sickle Cell Disease – it’s continued prevalence, the lack of improved treatments and the need to understand the pain and fear that a patient faces during an episode. Nothing is more empowering in the worst moment of fighting Sickle Cell Disease than the knowledge that you are not alone.
Michael A. Friend
Care taker - SCD