Background: Systemic lupus erythematosus, (SLE), is an autoimmune systemic rheumatic disease that predominantly afflicts African Americans (AA) and women. SLE is more severe among AA than other groups. SLE causes kidney failure, and osteonecrosis, and a high degree of disability. The Women of Courage Organization, founded by women who live with lupus, is an innovative grassroots organization in Roxbury, Massachusetts, and addresses the needs of AAlupus patients.
Objectives: 1. To improve quality of life, social support and health information available for women diagnosed with lupus. 2. To advocate for the health and social needs of AA lupus patients. 3. To form linkages with research institutions and to educate physicians regarding social issues for AA lupus patients.
Methods: The WOC accepts referrals from the Massachusetts Rehabilitation Commission, Boston Center for Independent Living, and hospitals in the Boston area. An assessment is conducted on all referrals. This focuses upon medical/social needs, including mental health, and is repeated at 6-month intervals. Each new member is assigned to an existing member for support and advocacy. The WOC also provides health care advocacy through strategies to access the health care system, including physician education.
Results: 1. The WOC is a well-recognized, structured community resource for women with SLE, health care providers and other agencies. 2. Establishment of strong linkages between research institutions and community. 3. Identified needs include employment, housing and medical concerns and referral to research studies for SLE. 4. Culturally relevant health education materials for physicians, lupus patients and the community
Learning Objectives: 1. Identify the barriers faced by urban minority women living with systemic lupus erythematosus. 2. Recognize the impact of poverty on quality of life for urban minority women living with lupus. 3. Evaluate the role of collaborative community and research efforts in improving quality of life for urban minority women living with lupus.
Keywords: Advocacy, Quality of Life
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: The Women of Courage Organization
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: Affiliation: President, Women of Courage Organization