Coping with sickle cell disease: a profile and perspective of a pioneer self-help group

Sickle cell anemia is a chronic, debilitating disease that is passed genetically from generation to generation. It is a disease marked by periods of well-being and crisis, and it has a profound effect on all bodily organs, shortening the lifespan of its victims. The disease also has far-reaching effects on family functioning and relationships. Support for affected families and individuals is therefore a vital component of any management regimen.In the 1960s, the idea for the Association for Sickle Cell Anemia Research (ASCAR) was implemented. The group was spearheaded by Dr. Roland B. Scott and Dr. Angella Ferguson, both of whom were members of the Department of Pediatrics at Freedmen's Hospital (now Howard University Hospital).This group was perhaps the first of its kind, and adopted as its goals education and family support as well as fund-raising to aid in the support of research. This article provides an overview of the development of this group, its organization and activities, as well as an appraisal of its accomplishments. It also offers specific suggestions for formulating similar groups.