In honor of Black History Month and leading up to Rare Disease Day, Rare Patient Voice proposal development associate Jessica Bolden shares her voice as a woman living with Sickle Cell Disease.
February 28 is Rare Disease Day, and Sickle Cell Disease is one of over 7,000 currently identified rare diseases. It also has a high prevalence in the Black community. As someone who lives with Sickle Cell, what else would you like people to know about the condition?
This disease has long been believed to be incurable. In recent news, more and more medical treatments have come to light that have claimed to be the cure, but are actually very new and still being developed. A recent news article stated that one of the new treatments that has come along has sparked anxiety in some and hope in others. Some have managed well by using natural treatments and remedies, which I’m interested in looking into more myself.
Why do you think it’s important for Black patients and family caregivers to share their voices by taking part in research?
Sickle Cell is a painful disease that is in desperate need of groundbreaking research. In my online Sickle Cell community, many women with SCD have stated that it is more painful than childbirth! I know of instances where people are sadly often in pain, and when we share our voice we increase hope in improving our quality of life.
February is Black History Month. Can you highlight an advancement in medicine or research which emerged from the Black community?
Let me tell you a little bit about Dr. Daniel Hale Williams! He lived from 1856 – 1931 and in his lifetime made great strides for African Americans in medicine. His medical facility, Provident Hospital, was the first to have an ethnically diverse staff and provide training for them. During this time, hospitals were not really admitting Black patients and certainly not hiring Black doctors, so this opened the door for them. One thing Dr. Williams is most known for is being the first doctor to perform a successful open-heart surgery during an emergency procedure, an amazing achievement. Another accomplishment in Dr. Hale’s career is being the first Black physician for Chicago’s street railway system. Eventually he became the chief physician for a run-down hospital that treated Blacks, which had a high mortality rate. He went to work, setting up services for ambulances, improving surgical techniques, and more.
