Lupus Education and Awareness

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Lupus is a major women's health disease that is often misdiagnosed and under-recognized. There is a lack of public understanding surrounding its seriousness and urgency. Lupus is a chronic autoimmune disease that affects an estimated 1.5 million to 2 million Americans. (National Institutes of Health (NIH), Systemic Lupus Erythematosus, 2003). Reports estimate that approximately one in every seventy-seven households or one in every two Americans has lupus. Of this ratio, ninety percent (90%) of people with Lupus are women; and develop lupus during the childbearing age (15-44). According to NIH (2003), Lupus is "three times more common in African American women than in Caucasian women and is also more common in women of Hispanic, Asian, and Native American descent." In addition, a CDC report revealed that over a six year period deaths attributed to lupus increased by sixty percent (60%). Among older African-American women, the increase was nearly seventy percent (70%).

Like many autoimmune diseases, lupus causes the immune system to attack parts of the body that "it is designed to protect" (NIH, SLE, 2003). The symptoms of lupus "can range from mild to severe and may come and go over time" (NIH, SLE, 2003). The symptoms of each patient are different but may include: pain in the joints and muscle pain, unexplained fever, red rashes commonly seen on the face, chest pain, unusual hair loss, pale or purple fingers, sensitivity to the sun, swelling in the legs or around the eyes, mouth ulcer, swollen glands, extreme fatigue, compromised kidney function, and cardiovascular complications (NIH, Systemic Lupus Erythematosus, 2003).

OWH National Lupus Awareness Campaign - Project Officer - Frances E. Ashe-Goins

The U.S. DHHS Office on Women's Health (OWH) recognizes the impact of this disease in the lives of young women. OWH has sponsored many community based lupus awareness programs and has received an overwhelming response from the community that highlighted a significant need for comprehensive, widespread, information about Lupus.

History of Past Collaborations

• Unlocking the Mystery of Lupus. In 1999-2001, OWH partnered with the Lupus Foundation of America to hold this educational program, initially targeted for DHHS employees and their families. The program was so successful that it was offered to other federal employees, community leaders, and the general public, culminating in a Spring 2001 Lupus National Town Hall Meeting for congressional members and their staffs in Washington, D.C. The town hall was also shown as a satellite presentation around the nation and in real time on the internet.
  
  
• National Community Outreach Awareness Program. Community groups in specified cities throughout the nation received funding on a competitive basis to conduct community seminars on the diagnosis, treatment, and care of lupus based on the format developed by OWH. The following organizations were awarded funding: Louisiana Office of Public Health, New Orleans, LA; Medical University of South Carolina, Charleston, SC; Mariposa Community Health Center, Nogales, AZ; Sanders & Associates, Richmond, VA; Jefferson County Clinic, Birmingham, AL; and the Alabama Department of Health, Montgomery, AL. For 2006, the most recent contracts were awarded to: Rivera, Sierra & Co., Brooklyn, NY; Rivera, Sierra & Co., Tulsa, OK; Scott Consulting, Inc., Richmond Center, WI; Alemap Consultants, Shreveport, LA; Sanders & Associates, Chester, VA; and Global Evaluation & Applied Research Solutions (GEARS), Decatur, GA.
  
  The contractors conducted more than 100 lupus education and awareness seminars with an average of 25 attendees per session. The target population was women between the ages of 18-68, representing all racial/ethnic groups. The most significant findings of these seminars was the desire for more information on the subject of lupus, a need for improved diagnosis and early detection of the disease, and the gap in knowledge about lupus among the medical professionals.
  
  
• Local LFA Lupus Chapters. Several of local chapters of the Lupus Foundation of America were awarded competitive contracts to provide lupus education and awareness to patients and their families in community settings. The Memphis chapter was able to reach over 6,000 people.
  
  
• Racial Disparities in Lupus Forum. OWH and the S.L.E. (Lupus) Foundation of NY participated in a forum at the 5th Annual International Lupus Congress in NYC. The forum included a presentation on new initiatives to establish a lupus registry to facilitate earlier disease intervention, case monitoring and the tracking of outcomes; government strategies to reduce health disparities in lupus; and discussion of the New York City Lupus Cooperative's success in addressing racial disparities in underserved communities, and its plans for a national program.
  
  
• Lupus and Nurses. Several organizations competed and won contracts to provide education and awareness to nurses. These organizations were: Lupus Foundation of America National Office; Florida Department of Health; Medical University of South Carolina.
  
  
• Women's Health Organizations. The Black Women's Health Imperative developed a lupus web-based outreach and education program. The site contained a physician locator service, a management and care section, and an educational module. The Full Circle Wellness Center in Inglewood, California, provided education, counseling and referral services to minority women.
  
  
• African Americans and Lupus: Invisible No More. Continuing its collaborative efforts with the S.L.E. Lupus Foundation of New York, the OWH participated in this forum at the Congressional Black Caucus' 34th Annual Legislative Conference. The forum was sponsored by Rep. Edolphus Towns (D-NY). Topics included a lupus overview; research findings, clinical trials, and community awareness and education.
  
  
• Medical Education: The National Hispanic Medical Association and the National Medical Association were awarded funding to provide lupus education to their members. The Lupus Foundation of America was funded to develop a national training program for medical professionals. OWH partnered with the NIH Office of Research and Women's Health and other partners to convene a scientific conference on the latest information on lupus diagnosis, care and treatment and future issues for medical/health care professionals, researchers, community leaders, and lupus patients.

Content last updated April 7, 2008.