|My name is DJ and I live in Jacksonville, Florida. I am a single father, an aspiring attorney, and a sickle cell patient.
I was 18 months old when I was first diagnosed with sickle cell disease. It was then that I experienced my first real pain crisis, which triggered my parents to take me to the emergency room. Tests were run and that is when my family discovered I was born with hemoglobin SS.
Living with this disease has impacted my life in many ways. My body has taken much of the beating when it comes to managing this disease. As a result of sickle cell, I have also been diagnosed with avascular necrosis in my left hip and end-stage renal failure. I also frequently deal with pain crises, which come and go as they please.
On a personal level, sickle cell has taken a toll on my academic career. Being sick has caused me to miss countless days of school. At the end of my senior year of high school, I was diagnosed with end-stage renal failure. Starting dialysis so young set me back much more than my peers. During my collegiate career, because of my treatment, I took a lower course load because I wasn’t sure how my body would be affected by managing my disease and being on dialysis. There were so many times I would have a paper due or a test to prepare for and a crisis would send me to the hospital just days before. It took me about seven years to complete my bachelor’s degree due to the setbacks and complications that come with sickle cell. If I didn’t have sickle cell, I would feel like I was living a more normal life. This disease is seen as nonexistent from the outside, but on the inside, my body is a battlefield.
An affordable cure would be monumental and would totally alleviate the pain many patients go through. Everybody who needs this cure should be able to get it, regardless of price. Prevention is ideal, but there should still be affordable access to a cure for those of us who are already living with this disease. A cure would give myself and others a sense of normalcy and alleviate the limitations placed on us.