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The Reality of Battling Lupus on a Daily Basis

The word “lupus” comes from the Latin word for wolf, and it was coined bythe thirteenth century physician, Rogerius. He used it to describe disfiguring facial lesions that were similar to the look of a wolf’s bite.

Lupus is an autoimmune-system disease has been compared to a ferocious wolf attacking almost every organ in the body. Many individuals have the characteristic red “butterfly” rash on their face, which can be compared to the facial markings of a wolf. The lesions expand over the bridge of the nose to the cheek area. 

Lupus is a chronic autoimmune disease where proteins or autoantibodies attack healthy organs and tissues in the body, which results in inflammation. Approximately 1.5 million Americans are living with systemic lupus erythematosus in the United States.

Health disparities 

The Lupus Foundation of America estimates that 1 in 250 African American women will develop Lupus. Other women of color like Hispanics/Latinos, Native Americans, Native Hawaiians, and Pacific Islanders are 2 to 3 times more likely to develop lupus and complications than Caucasians. Minority women tend to develop this disease at a younger age. Ninety percent of individuals living with lupus are female, and the disease mostly affects women of childbearing age.

It is estimated by the Lupus Foundation of America that up to 60 percent of lupus patients will develop lupus nephritis/kidney disease, and up to 66 percent of children with lupus develop nephritis. In addition to kidney disease, lupus patients may experience heart disease, lung disease, joint pain, and have chronic debilitating fatigue.

Research shows that individuals with lupus from racial and ethnic minority populations develop more kidney and neurological manifestations, as well as blood abnormalities like low platelets or antiphospholipid syndrome. Black, Asian, and Hispanic patients may experience more rapid progression of their disease and complications sooner after their diagnosis is established. Minority patients also have been found to have less social support for their disease.

The annual death rate from lupus is also highest among Native Americans and African Americans. Raising awareness in these communities is essential. 

Soldiering on 

I first encountered the reality of lupus when my friend in medical school was diagnosed with the disease. She sadly passed away from complications. I have encountered so many women from the Black and other minority communities that had delayed diagnosis or didn’t receive adequate education about this disease. Although this condition can be debilitating, there is hope that one can have a successful professional and family life.

In recent years, the attention to lupus has been increasing. Maya L. Harris is a lawyer, single mother, writer, policy advocate, sister of Vice President Kamala Harris, and has been a “lupus warrior” for 30 years. Last year, she broke her silence about living with the disease as she described her battle in a Women’s Health Magazine. By using her voice, she has been an inspiration for others facing the challenges when trying to survive and thrive with this autoimmune disease.

Singer and actress Selena Gomez told the public in 2015 that she was diagnosed with lupus and took some time away from the spotlight to treat her lupus with chemotherapy (which can be used to help control inflammation for this disease). In 2017, she again highlighted her struggle with kidney disease, and she required a kidney transplant. During a television interview, she admitted that she didn’t want to accept that she had lupus initially, like so many other women and men. After her transplant, she has gone on to excel in her singing career and has become an outspoken advocate.  

Singer Toni Braxton has spoken candidly about her battle with lupus and early heart complications. Since being diagnosed with lupus and nephritis in 2012, entertainer and television personality, Nick Cannon has also taken the opportunity to educate more people about this complex disease. 

As you can see, anyone can be affected. Recently, I participated in the Lupus Foundation of America Virtual Advocacy Summit and spoke to Congress about the need for increase funding for research and educational programs, as well as to expand the number of fellowship programs around the country so more female physicians — especially minority physicians — can dedicate their lives help these courageous warriors live their best lives. 

To all the lupus warriors, you are not invisible. We see you. We see your courage. 

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