On the heels of a gathering of lupus educators patients, and pharmaceutical companies, critical gaps in public awareness have been found. Despite disproportionately impacting African-American women, lupus remains largely enigmatic among screenings and awareness within the Black community.
Lupus, a chronic autoimmune disease with the ability to damage any part of the body (skin, joints, and/or organs), is often diagnosed when a person’s immune systems goes haywire and begins to fight and destroy healthy tissue rather than viruses, bacteria, and germs. The Lupus Foundation of America, The Lupus and Allied Diseases Association and the Lupus Research Alliance convened a day-long panel in College Park, Md. Sept. 25, to discuss the disease that is two to three times more prevalent among women of color and among the metropolitan’s Black population.
Sufferers are “more likely to have organ system involvement, more active disease, and lower levels of social support compared with White lupus patients, “according to the foundation.
The meeting sought to bring those suffering with the disease, both to the attention of the Food and Drug Administration pharmaceutical companies and potential supporters. “This meeting is a tremendous opportunity for people with lupus to share how the disease impacts their lives and what types of treatments make the most difference,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “The FDA, the pharmaceutical industry and those who treat people with lupus need to hear these voices and understand the urgent need to improve the standard of care for people living with this disease and deliver better treatments to improve their quality of life as fast as possible.”
Some 63 percent of people with lupus reported being incorrectly diagnosed, with 55 percent seeing four or more physicians before being accurately diagnosed. The diagnosis confusion is because lupus symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease and a number of heart, lung, muscle, and bone diseases.
Fatima Walker, a Ward 4 resident who has lived with lupus for more than 26 years since her diagnosis, told the AFRO that for years she was treated for other illnesses, including chronic fatigue, without any resolve. “It took about seven years until the lupus diagnosis stuck – and I am grateful for it, because now the treatments are much more effective,” Walker said. “Initially, the rheumatoid arthritis was the diagnosis, which didn’t make sense to me because that was something my grandma had . . . This has been rough, but at least I’m on the right page.”
Even more concerning for health advocates than the masking of symptoms lupus presents, is that nearly 73 percent of Americans between the ages 18-34 have either not heard about lupus or know little or nothing about lupus – this is the very age group at greatest risk for the disease. Nearly 300 people attended the panel, including 120 people living with lupus.
A Lupus Research Alliance Washington D.C. Walk with Us to Cure Lupus is scheduled to be held on Oct. 21.