As a senior at Florida A&M University, Sharon Harris had been juggling a full course load, three jobs and the other demands of college life when she started feeling ill.
He visited the doctor and went to the hospital emergency room for gastrointestinal problems, and health care providers (HCPs) thought he might have Crohn’s disease. The medication he received didn’t help, but he managed to push through and reach graduation.
When Harris’ mother attended her graduation ceremony, she asked her daughter about the butterfly-shaped rash on her cheeks and nose. Harris hadn’t realized it, but assumed it was stress-related. He would ask his doctor in Detroit the next time he returned home.
Once home, the provider ordered blood tests, which came back positive for blood markers. discoid lupus and systemic lupus erythematosus (SLE). Harris said he will always remember that day, Feb. 4, 2002, as the moment his life changed.
Read: Frequently asked questions about lupus >>
Harris has since become a local and national advocate for people with lupus and founded Lupus Detroit and work with other organizations to support patients through physical, mental and financial difficulties related to the disease. He continues to work despite his own health problems, including a stroke in 2015 and stage 5 kidney failure.
“Lupus is a very serious autoimmune disease that can cause other autoimmune diseases, and I have been diagnosed with other autoimmune diseases,” Harris said. “A common problem is that there is no single test that can diagnose lupus, and it has been reported that patients need years to obtain an accurate diagnosis. That’s a long wait when a person’s hair is falling out; their joints and bones hurt; and they are fatigued, have brain fog, and kidneys that are failing. It takes a toll on the 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” usually refers to SLE. Lupus, an autoimmune disease, attacks the body’s connective tissue and can affect all organ systems.
Discoid lupus, the diagnosis Harris received, is a type of lupus called
cutaneous lupus erythematosus (CLE), known mainly for the presence of a “malar rash” or “butterfly rash” in the face. Patients with lupus can have both SLE and CLE.
Women account for 9 out of 10 cases of lupuswith Blacks/African Americans, Native Americans/Alaska Natives, and Asian Americans representing 4 in 10 of the estimated cases of SLE in the United States, while Hispanic and Latino patients represent 2 in 10 cases. Black/African American women with lupus die up to 13 years younger than white women with lupus.
Dr. Joy Buie, MD, vice president of research at
Lupus Foundation of Americasaid there are multiple reasons for the high rates of SLE and worse outcomes among people of color.
“When we think of
disparities in general“We have to think about the social conditions and the social context that people live in,” Buie said. “We know that communities of color have been disenfranchised in the United States, and thinking specifically about Black and African American women, we know that those conditions had negative health implications. Psychosocial stressors, structural racism, disadvantage financial difficulties, economic instability and lack of educational opportunities fuel susceptibility to 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 that Black patients with lupus were more likely to have negative experiences with health systems, such as
rushed communication and lack of trust in providers, or more difficulty accessing care due to lack of transportation or insurance or living further away from specialists. Black people living with lupus were also more likely to lose their jobs after being diagnosed, possibly due to the severity of their illness, making it difficult for them to maintain employment.
While
1 out of 5 American women who have positive antinuclear antibodies, or ANA, key markers of lupus, will not all develop the disease. Buie quote epigenetics (the way your environment and behavior can affect how your genes function) has an effect on the development of lupus among women of color.
Lack of sleep, obesity, smoking, viruses and bacteria have also been associated with an increased risk of lupus, and Buie said some research shows that exposure to
silicaA chemical found in the environment and used in many commercial products, such as cleaning and skin care products, may contribute.
“It’s genetics, hormones, environment; the intersection of those factors play a role in the development of lupus,” Buie said. “The problematic thing about this disease is that it’s not a visible disease. It’s quite invisible. You can look at a person and not even know 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 manifest differently in each individual. One person may have a rash and joint inflammation, while another may have kidney and heart disease. Even after diagnosis, disease management can be challenging if patients do not have access to appropriate specialists and treatments due to financial concerns, location, or lack of education about the disease.
““There is hope”
Buie is optimistic, but believes 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 people at risk and offer lifestyle changes and treatments to help prevent the disease or stop its progression.
As for Harris, she has worked hard to not let lupus destroy her dreams. In addition to launching Lupus Detroit, she also worked as public relations director for 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 defense has also taken her to places she never imagined. During his tenure at the Autoimmune Associationtestified at an FDA hearing about the high cost of lupus drugs. She gained a brief moment of fame when she appeared in an article about rapper Snoop Dogg’s daughter, Cori Broadus, who also lives with lupus.
“For me, a typical day involves getting stronger physically,” Harris said. “I spend my time researching everything related to autoimmune diseases and seeking additional resources. Just because I have a treacherous disease 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 offer a better future for those who suffer from lupus or are at risk.
“Know that there is hope,” Buie said. “There are medications approved by the FDA in the last 20 years to treat lupus, and many more treatments in the pipeline. There is even talk of opportunities for a cure. Lupus does not have to be a death sentence, but the key is to have the right health care team and find ways to take control of your health.
This educational resource was created with the support of GSK, Merck and Novartis.
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