Tackling sickle cell disease from within [Video]

Evie Junior was born with sickle cell disease, a life-threatening condition that affects around 100,000 Americans, most of them Black and Latino. People with sickle cell disease have blood cells that are shaped like a hook (or sickle) rather than smooth and round, which can create clogs, causing intense pain, organ damage, and stroke.  

By age 18, Evie experienced severe pain crises once or twice a month. In his mid-20s, he took part in a CIRM-funded clinical trial at UCLA, where researchers collected his blood-forming stem cells and, in the lab, inserted a gene that prevented the sickling of the cells. The modified cells were returned to his body to create a new blood supply.  

Since the treatment, Evie hasn’t had any pain crises requiring medications or trips to the emergency room. For World Sickle Cell Day (June 19), we asked Evie Junior why it’s important to be a champion for SCD.