For most people, sunshine and warming temperatures serve as welcome heralds of summer. But for Renita Lewis, they can trigger life-threatening disease flares.
“People say, ‘You look too good to be sick,’” said Lewis, 51, of Midwest City. But Lewis, a nurse, suffers from lupus, an autoimmune illness that strikes African Americans like her at disproportionate rates.
Lupus occurs when the immune system becomes unbalanced, leading to the development of antibodies and chronic inflammation that damage the body’s organs and tissues. Sufferers experience periodic disease flares, affecting organs that can include the kidneys, lungs, skin and joints, as well as the cardiovascular system.
According to the Lupus Foundation of America, more than 1.5 million Americans suffer from the disease. Studies have found that it strikes African Americans at roughly five times the rate it affects European Americans.
“We still have a great deal to learn about why African-American women are at greater risk of lupus and at greater risk for major organ damage and early death from lupus than other races,” said Oklahoma Medical Research Foundation Vice President of Research Judith James, M.D., Ph.D.
“We have investigators who are working on genetic and genomic factors, as well as our work which has focused on differences in the body’s major defense system—the immune system. In all likelihood, it’s probably a complicated combination of these factors, and we will keep working until we figure this out.”
Lewis’ first symptoms appeared when she was in her 20s: aching muscles, swollen fingers, skin rashes. But she wasn’t diagnosed until a decade later, by which time she also suffered from shortness of breath, fatigue, asthma, stomach issues and inflammation around her heart. “I don’t have kidney problems, but pretty much every other one of my organs is affected,” she said.
She began daily doses of prednisone, hydroxychloroquine, aspirin and anti-inflammatory medications to control her symptom. Still, over time, lupus has exacted an increasing toll on her body. In March, after a bout of pericarditis—swelling of the membrane surrounding her heart—hospitalized her, she was forced to take short-term disability until she’s well enough to return to work.
For more than a decade, physicians and clinical staff at OMRF, which has been named 1 of only 10 of the nation’s Autoimmunity Centers of Excellence by the National Institutes of Health, have helped Lewis manage her condition. “They’re on the cutting edge of research, especially on autoimmune disease, and they really care about me and want me to have as normal a life as possible,” Lewis said.
As a lupus patient and a healthcare professional, Lewis is happy to participate in research studies on the disease at OMRF. “By donating blood and taking part in studies, I hope I can help researchers develop new treatments,” she said. If scientists are able to understand why it exacts such a heavy toll on African Americans, she said, “That would be a total game-changer.”
In a study published in May in the Journal of Allergy and Clinical Immunology, an OMRF research team led by James moved closer to answering this question.
The scientists found that African Americans with certain risk factors for lupus had elevated activation levels in T cells, which are known to be important in lupus. Meanwhile, European Americans with similar risk factors did not. That may be a reason at-risk African Americans are more likely to develop the disease, said OMRF’s Samantha Slight-Webb, Ph.D., lead author on the study. And the findings could prove key to helping allay the suffering of patients like Lewis.
“Identifying this protective T-cell response could be pivotal in identifying therapeutic targets and potential drugs that may prevent people from transitioning into the disease,” said Slight-Webb. “It would also help us look at drugs—and dosages—differently based on ethnicity to improve outcomes for African-American patients, who are at highest risk for severe disease.”
Lewis would welcome any findings that could help improve her quality of life. Still, she’s more interested in developments that could benefit her daughter, Taraya, 19.
Lewis’ only child, Taraya previously tested positive for antinuclear antibodies, or ANA, an indicator of lupus activity. Taraya also has several relatives on her father’s side with the disease. “So, when she says she doesn’t feel good, I worry,” said Lewis.
Like all mothers, Lewis wants more than anything to protect her child. “If researchers could find a way to prevent lupus from starting, that would be a dream,” she said. “I never want my daughter to go through this.”
For information on treatment or participating in one of OMRF’s studies or trials, please call (405) 271-7745 or email [email protected].