My parents were told I had sickle cell through newborn screening, but I had no idea until I was 12. I didn’t have a lot of information about the disease. I still had a lot of unanswered questions, so it was really tough responding to people and telling them about my condition.
Another thing was that my family generally did not want people to know about my condition. It was a stigma in a way. I wasn’t comfortable telling people what was going on with me and explaining why maybe I was always absent at school or why I missed an exam or not catching up on school activities in general. It was just a difficult period.
In college, I started seeing a hematologist at a teaching hospital and joined a support group. The support group had discussions about the disease, education, and they were creating awareness, telling us new findings and how to better manage the disease. All this was very interesting. I was so happy to be involved with them. I was able to think about myself without thinking about the disease.
