Holt, the mother of two, sought counseling at the sickle cell organization after her doctor told her he didn't know what else to do about complaints she had about pain in her shoulder. The other is at UNC Hospitals in Chapel Hill. Her bones had deteriorated because of clogged blood vessels, with the bone rubbing up against the joint. She would also need a hip replacement. Sickle cell was once lethal at an early age, but now patients often live past age 40 with therapies, blood transfusions or surgery.
Doctors try to ward off attacks by prescribing a healthy diet and moderate exercise.
Robinson's nonprofit organization, which has offices in Greensboro, Burlington, High Point and Winston-Salem, also provides transportation to medical appointments and a pediatrics clinic. The agency is responsible for screening newborns for the disease, and also provides free screening for adults. Grants afford part-time nurses for limited medical services, and counselors for stress management for its 383 active patients. Money is part of the organization's struggles. But not to have the support of the agency and the advocacy would be an even greater hardship.