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Sickle Cell Support Group The goal of the 3-year program is to improve the lives of children and families affect by sickle cell disorders education and family support. Sickle cell disease is one of the most common genetic disorders in the United States, affecting one out of every four hundred African Americans. While people of African descent are the most likely Americans to have sickle cell disease, people of all racial groups may have the disease. The importance of educating an individual or community is critical in resolving many issues related to sickle cell disease. When a family member has a chronic disease, the entire family suffers. Individuals are educated on the emotional, mental and physical ramifications of the disease. Project staff first identify persons with sickle cell, members of their existing support system, and key community leaders. Staff then conduct focus groups with members of those three groups and identify the needs of persons with sickle cell disease and resources available in that given community. The staff member then helps the community to develop an ongoing group to meet the specific needs of persons in that community. In one community the major need might be education, while in one community it might be social support. A third locale might focus on fundraising to help meet the needs of individuals with sickle cell disease.
Please contact Ruby Brown for more information.
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