As a senior at Florida A&M University, Sharon Harris had been juggling a full course load, three jobs and other demands of college life when she started to feel sick.
She visited the doctor and went to the hospital emergency room for gastrointestinal problems, and healthcare providers (HCPs) thought she might have Crohn’s disease. The medication she received didn’t help, but she powered through to make it to graduation.
When Harris’ mother came to her graduation ceremony, she asked her daughter about the butterfly-like rash on her cheeks and nose. Harris hadn’t noticed, but assumed it was related to stress. She’d ask her HCP in Detroit the next time she went home.
Once home, the provider ordered blood work, which came back positive for markers of discoid lupus and systemic lupus erythematosus (SLE). Harris said she’ll always remember that day — February 4, 2002 — as the moment her life changed.
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Since then, Harris has become a local and national advocate for people with lupus, founding Lupus Detroit and working with other organizations to support patients through physical, mental and financial difficulties related to the disease. She continues the work despite her own health struggles, including a 2015 stroke and stage 5 kidney failure.
“Lupus is a very serious autoimmune disease that can lead to other autoimmune diseases, and I’ve been diagnosed with additional ones,” Harris said. “A common problem is that there isn’t a single test that can diagnose lupus, and it’s been reported it takes patients years to get an accurate diagnosis. That’s a long wait when a person’s hair is falling out; their joints and bones are aching; and they’re fatigued, have brain fog and have kidneys that are failing. It takes a toll on a patient’s mental health, finances, body, family life, emotions, work life and social life.”
Why are women of color more likely to get lupus?
Systemic lupus erythematosus (SLE) is the most common form of lupus, and the general term “lupus” typically refers to SLE. An autoimmune disease, lupus attacks connective tissue in the body, and it can strike every organ system.
Discoid lupus, the diagnosis Harris received, is a type of lupus called
cutaneous lupus erythematosus (CLE), known mostly for the presence of a “malar rash” or “butterfly rash” on the face. Lupus patients can have both SLE and CLE.
Women make up 9 out of 10 lupus cases, with Black/African American, Native American/Alaska Native and Asian Americans representing 4 out of 10 of the estimated SLE cases in the United States, while Hispanic and Latino patients make up 2 out of 10 cases. Black/African American women with lupus die up to 13 years younger than white women with lupus.
Dr. Joy Buie, M.D., vice president for research with the
Lupus Foundation of America, said there are multiple reasons for high rates of SLE and worse outcomes among people of color.
“When we think about
disparities in general, we have to think about social conditions and the social context in which people live,” Buie said. “We know communities of color have been disenfranchised within the United States, and specifically thinking about Black and African American women, we know those conditions have had negative implications for health. Psychosocial stressors, structural racism, financial disadvantages, economic instability and lack of educational opportunities feed into susceptibility for developing any disease.”
Buie also oversees the foundation’s health equity work, which includes research on lupus and racial health disparities. The foundation cites studies indicating how Black lupus patients were more likely to have negative experiences with healthcare systems, such as
rushed communication and lack of trust in providers, or more difficulty accessing care due to a lack of transportation or insurance or living farther away from specialists. Black people living with lupus were also more likely to lose their jobs after being diagnosed, possibly because of the severity of their disease, which made it harder for them to maintain employment.
While
1 in 5 American women have positive antinuclear antibodies, or ANA — key markers for lupus — not all will develop the disease. Buie cites epigenetics — the way your environment and behavior can affect how your genes work — as having an effect on the development of lupus among women of color.
Lack of sleep, obesity, smoking, viruses and bacteria have also been associated with increased lupus risk, and Buie said some research shows that exposure to
silica, a chemical found in the environment and used in many commercial products like skincare products and cleaners, can be a contributor.
“It’s genetics, it’s hormones, it’s the environment — the intersection of those factors all play a role in developing lupus,” Buie said. “What’s problematic with this disease is that it’s not a visible disease. It’s quite invisible. You can look at a person and not even tell they’re sick. That’s the challenge of living with a disease like lupus.”
As Harris experienced, getting a correct diagnosis can also take time because lupus can show up differently in each individual. One person might have rash and joint inflammation while someone else could have kidney and heart disease. Even after diagnosis, disease management can be challenging if patients don’t have access to the right specialists and treatments as a result of financial concerns, location or lack of education about the disease.
“There is hope”
Buie is optimistic, however, that change could be on the horizon. The Lupus Foundation of America recently launched a project to predict who might get lupus to help prevent it in others. Researchers will follow family members of people with lupus over time to see what changes occur and who eventually develops the disease. The data can then be used to identify at-risk individuals and offer lifestyle changes and treatments to help prevent the disease or stop its progression.
As for Harris, she’s worked hard to not let lupus destroy her dreams. In addition to launching Lupus Detroit, she also worked as a public relations director for the Lupus Alliance of America, Michigan Indiana Affiliate. She earned a master’s degree in public policy and hopes to write a book in the future.
Her advocacy has also taken her places she never imagined. During her tenure at the Autoimmune Association, she testified at an FDA hearing about the high cost of lupus medication. She was tickled by a brief moment of fame when she appeared in an article about rapper Snoop Dogg’s daughter, Cori Broadus, who’s also living with lupus.
“An average day for me involves getting physically stronger,” Harris said. “I use my time researching all things autoimmune disease and looking for additional resources. Just because I have a treacherous disease, it doesn’t mean I want to be complacent and rest on my laurels.”
Although Harris is waiting for a kidney transplant, her advocacy and the work of researchers could deliver a brighter future for those with lupus or those at risk.
“Know there is hope,” Buie said. “There are medications approved by the FDA in the last 20 years to treat lupus, and so many more treatments in the pipeline. There’s even conversation about opportunities for a cure. Lupus doesn’t have to be a death sentence, but the key is to get the right healthcare team in place and find ways to take control of your health.”
This educational resource was created with support from GSK, Merck and Novartis.
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