"As an African American woman living with lupus, I realize that there are still gaps in understanding how lupus impacts every aspect of my life. The Be WELL Study provides me an opportunity to have a voice and contribute to lupus research in ways that can change the way the scientific and medical community understands lupus."
African American Women and Lupus
Systemic lupus erythematosus (SLE) or lupus, is an autoimmune disease. It is a potentially debilitating disease that can result in skin rashes, sensitivity to light, and can also take a toll on internal organs, such as the kidneys and heart. Lupus can impact multiple systems in the body.
Studies have found that African American women, particularly those of childbearing age younger than 45 years old, are most affected by lupus. Approximately 1 in every 245 African American women have lupus, which is much higher than for men as well as women of other racial backgrounds. Rates of lupus are about 3-4 times greater than those for White women, and about 10 times higher than for men. Lupus is often times severe among African American women. African American women are more frequently affected by organ damage and other health conditions that result from having lupus. For example, studies have found that African Americans with lupus are more likely to suffer from damage to the heart and kidneys. African Americans with lupus are also more likely to have these complications earlier in life.
With treatment and effective disease management, most people with lupus can expect to live full lives. However, there are still very pronounced disparities in health experienced by African American women with lupus. Researchers have found that African Americans with lupus are more likely to die from this disease compared to people with lupus of other racial groups. Moreover, studies have suggested that these racial disparities have actually been increasing over time.
A Need for Action
These statistics are very alarming and call attention to the need for more research to find out why lupus has such a great impact among African American women. Studies have found that people's experiences play a large part in explaining health consequences due to lupus. There is evidence that people's economic circumstances, where they live, race, and issues related to treatment and access to health care impact lupus outcomes. In fact, research indicates that biological or genetic factors are not the key reasons for these huge disparities in lupus.
Black Women's Experiences Living with Lupus (Be WELL) Study attempts to address major gaps in our knowledge of why African American women are disproportionately impacted by lupus. This research is aimed to get at how the experiences of African American women with lupus can impact their health. We want to look at not only the risk factors, but also the things that protect health. Doing so will help to ultimately reduce the burden of lupus experienced by African American women and promote the health of all people living with lupus.
For more information on research on lupus among African American women, you can access the articles below:
Lim SS, Bayakly AR, Helmick CG, Gordon C, Easley KA, Drenkard C. The incidence and prevalence of systemic lupus erythematosus, 2002-2004: the Georgia Lupus Registry. Arthritis Rheumatol. 2014:66(2): 357-68.
Feldman CH, Bermas BL, Zibit M, Fraser P, Toff DJ, Fortin PR, Massarotti E. Designing and intervention for women with systemic lupus erythematosus from medically underserved areas to improve care: a qualitative study. Lupus. 2013;22(1):52-62.
Drenkard C, Dunlop-Thomas C, Easley K, Bao G, Brady T, Lim SS. Benefits of a self-management program in low-income African American women with systemic lupus erythematosus. Lupus. 2012;21(14):1586-93.