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.
CIRM: Why is raising awareness of sickle cell disease important to you?
EJ: It’s important to inform doctors and medical professionals about sickle cell disease because it’s an invisible disease. There’s a lot of stigma and a wide variety of symptoms for sickle cell, which can be easy for medical professionals to disregard. It’s also important for people not in the medical field and family members of sickle cell patients because advocacy is important because sickle cell patients are at their worst and can sometimes not convey everything they’re going through.
CIRM: What do you want people to know about sickle cell disease?
EJ: Lifestyle choices, including diet, sleep, and stress levels, can cause a sickle cell crisis.
CIRM: Why is it important to continue to invest in finding treatments for sickle cell disease?
EJ: Having sickle cell disease can really tank your quality of life. It can force you to fall short of your goals and isolate you from your loved ones due to your family and friends not understanding what you’re going through.
I don’t think anyone wants this for anyone, but kids shouldn’t have to put their future on hold or their goals. We want kids to shoot for the stars and never stop pursuing their goals. Many times, sickle cell got in the way of me pursuing my dreams. I truly don’t wish this on anyone. Sickle cell research is important because everyone deserves a chance.
CIRM: CIRM funds many projects seeking to better understand sickle cell disease and to translate those discoveries into stem cell- and gene-based therapies. Why is it important that an agency like CIRM continues to invest in regenerative medicine research and treatment for sickle cell disease?
EJ: Again, I think all agencies should invest in sickle cell research; the more, the better. The same with all diseases that affect people, everyone deserves a chance at providing themselves with a good quality of life.
Learn more on how CIRM is championing change for sickle cell in California and how you can help spread SCD awareness at our website, cirm.ca.gov/sickle-cell.
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- Source: https://blog.cirm.ca.gov/2024/06/18/tackling-sickle-cell-disease-from-within/