As a senior at Florida A&M University, Sharon Harris was juggling a full course load, three jobs and other demands of college life when she started feeling sick.
She visited the doctor and went to the hospital emergency room for gastrointestinal problems, and her health care providers (HCPs) thought she might have Crohn’s disease. The medication he received didn’t help, but he made it through 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 stress related. She would ask her HCP in Detroit the next time she went home.
Once home, the provider ordered a blood test, which was positive for her markers discoid lupus and systemic lupus erythematosus (SLE). Harris said she will 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 Detroit wolf and working with other organizations to support patients through physical, mental and financial difficulties associated with the disease. She continues to 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 is not a single test that can diagnose lupus, and it has been reported that patients need years to make an accurate diagnosis. It is a long wait when a person’s hair falls out. Their joints and bones ache. and they are tired, have brain fog, and have failing kidneys. It has an impact on a patient’s mental health, finances, body, family life, emotions, professional 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 generic term “lupus” usually refers to SLE. An autoimmune disease, lupus attacks the body’s connective tissue and can strike any organ system.
Lupus discoid, the diagnosis Harris received, is a type of lupus called
cutaneous lupus erythematosus (CLE), known mainly for the presence of a “malarial rash” or “butterfly rash” in the face. Patients with lupus can have both SLE and SLE.
Women make up 9 out of 10 cases of lupuswith Black/African American, Native/Alaska Native, and Asian American representing 4 out of 10 of the estimated cases of SLE in the United States, while Hispanic and Latino patients account for 2 in 10 cases. Black/African American women with lupus they die up to 13 years younger from the white women with wolf.
Joy Buie, MD, vice president for research with the
Lupus Foundation of Americasaid there are many reasons for high rates of SLE and worse outcomes among people of color.
“When we think
inequalities in generalwe 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 especially when we think about black and African-American women, we know that these conditions have had negative effects on health. Psychosocial stressors, structural racism, economic disadvantage, financial 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 showing how black lupus patients were more likely to have negative experiences with health care systems, such as
rushed communication and lack of trust in providers or greater difficulty accessing care due to lack of transportation or insurance or living farther from specialists. Blacks living with lupus were also more likely to lose their jobs after diagnosis, possibly because of the severity of their disease, which made it difficult for them to maintain employment.
While
1 in 5 American women who have positive antinuclear antibodies, or ANAs — key markers for lupus — will not all develop the disease. Buie reports epigenetic — how your environment and behavior can affect how your genes work — as they affect the development of lupus in women of color.
Lack of sleep, obesity, smoking, viruses and bacteria have also been linked to an increased risk of lupus, and Buie said some research shows that exposure to
silicona chemical found in the environment and used in many commercial products such as skin care products and cleaners may contribute.
“It’s genetics, it’s hormones, it’s the environment — the intersection of these factors plays a role in the development of lupus,” Buie said. “What’s problematic about this disease is that it’s not a visible disease. It’s pretty 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 the right diagnosis can also take time because lupus can appear differently in each person. One person may have a rash and inflamed joints while another may have kidney and heart disease. Even after diagnosis, disease management can be difficult if patients do not have access to appropriate specialists and treatments as a result of financial concerns, location, or a 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 was 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 will eventually develop 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 halt its progression.
As for Harris, she has worked hard not to let the wolf destroy her dreams. In addition to launching Lupus Detroit, she also served as director of public relations 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 Autoimmune Associationtestified at an FDA hearing about the high cost of lupus medication. She was tickled with a brief moment of fame when she was featured in an article about rapper Snoop Dogg’s daughter, Cori Broadus, who also lives with lupus.
“An average day for me involves getting physically stronger,” Harris said. “I spend my time researching all things autoimmune disease and looking for additional resources. Just because I have an insidious 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 researchers’ work could provide a brighter future for those with lupus or those at risk.
“Know that there is hope,” Bui said. “There are drugs that have been approved by the FDA in the last 20 years to treat lupus and so many more treatments in the pipeline. There is even talk of opportunities for treatment. Lupus doesn’t have to be a death sentence, but the key is to create the right healthcare 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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