When someone tells you about Sickle Cell Disease, whether it’s a person living with it or a physician, what goes through your mind? It’s safe to say that you don’t know too many people that have it. When I tell someone that I have the Sickle Cell Trait, just about every person tells me that they know someone living with the disease or the trait. Sickle Cell Disease is lifelong blood disorder affecting between 70,000 and 100,000 individuals in America. Three million people have the trait – a mutated gene passed from parents to children that causes red blood cells to harden and sickle. The disease causes painful episodes (crises), serious infections, seizures and strokes because of the body’s limited ability to carry oxygen to vital organs. When sickled cells travel through blood vessels, they clump together, causing crises.
My older sister ,Teona Bradley-Johnson has the trait and we inherited it from our mother, Terry. My late brother, Terrance Bradley lived with Sickle Cell for 31 years until his death in April 2005 (Me and my siblings have different fathers and Terrance’s father also has the trait). For so long, the effects of the disease ravaged his body and organs leading up to the worst crisis he ever had in March 2005. He died of congestive heart failure the following month. Living with a person that has Sickle Cell can be hard because you empathize with their struggles and hate to see them in pain. You see them in the emergency room constantly, waiting for hours to be admitted. Not enough medication can stop the pain, although it works from time to time. A Sickle Cell patient needs regular blood transfusions to replace the sickled blood with new blood, risking iron overload. Drinking enough fluids and getting enough rest are important. Terrance couldn’t finish high school because he missed so many days. He worked a couple jobs but couldn’t keep them because he spent so much time in the hospital. As a young girl in Cleveland, Ohio, I can remember the many times the ambulance came to our home and seeing my brother wheeled away in excruciating pain. The cold winters kept him in the hospital nearly every year. Nevertheless, Terrance was determined to live a full and normal life.
There are different forms of Sickle Cell, and my brother had a severe type as well as Thalassemia, another blood disorder. Anytime I complained about caring for him on his bad days (and believe me, he used to run me ragged), he would say, “You could never handle the pain.” It showed me that God makes people with Sickle Cell extra strong so they can bear the constant pain. And when he died, I was a sophomore at Spelman College and I felt God calling me to work on his behalf and spread awareness wherever I go.
I have volunteered with Sickle Cell organizations and held programs on my college campus as a member of the Miss Spelman College court. I sometimes attend support group meetings at the Jackson Medical Mall and have written many stories of people living with Sickle Cell just so people out there could learn more. Patients have great stories, and most of the time they are misunderstood by nurses and physicians. Over the past year, I have written stories with the help of the Mississippi Sickle Cell Foundation and I see myself as an ally and a storyteller spreading awareness. If at least one person reads an article and learns something about Sickle Cell, then I have done my job. This month, I will write stories and attend various events in the Jackson metro area. Supporting families and patients is important to me, and when I talk to those affected by the disease it’s like I’m talking to my brother again. They are going through what he went through.
When I interviewed a brother and sister this time last year, it was for a story about a bone marrow transplant that cured the young lady of Sickle Cell Disease. I was in awe! I never met someone that was CURED! When I told my mother, she said that my brother was to going be listed in a bone marrow registry and I felt kind of sad. I had NO idea. What if I had been the perfect match? It’s something I think about from time to time. My mother is in the process of editing a book about her only son, his life, and how she dealt with the disease. I can’t wait for its release. If you spread awareness in your own way, that’s great because we can always learn more about pain management, patient and family support and research for a universal cure. Let’s break the silence together.