Sickle cell children are living longer than ever, but as adults they face challenges to get basic care

When her daughter was little, Pamela Madu quit her job as a teacher to be a nurse so she could better understand what doctors were telling her about her daughter’s serious blood disorder.

Elechi Madu, now 16, has sickle cell disease, a genetic condition that causes deformations in red blood cells that clog or break throughout the body. Patients like Elechi often suffer an array of lifelong complications and chronic pain.