Muscle weakness and swelling, trouble walking up a flight of stairs, difficulty breathing: Don’t mistake these as inevitabilities of growing older. It could be a sign of myositis, a rare autoimmune disease that involves chronic inflammation of muscles. Along with that inflammation comes other symptoms, which regular people — and even doctors — may mistake as a simple sign of aging or a less serious medical issue.
May is Myositis Awareness Month, and The Myositis Association (TMA) is emphasizing the disparate impacts on women of color this year. A recent data analysis by TMA found nonwhite women are twice as likely to die than others with the disease, and they’re four times more likely to die than white men.
Myositis is a disease, but it’s also used as a generic term to describe other diseases such as dermatomyositis, necrotizing myopathy and polymyositis.
Cheilonda Johnson, assistant professor of medicine at Hospital of the University of Pennsylvania, said the only myositis disease African Americans are less likely than whites to be diagnosed with is inclusion body myositis. That means African Americans are diagnosed with all other forms more often.
One reason African American women are more likely than white women and men to die from these diseases is because African Americans with antisynthetase syndrome have more severe lung issues. Johnson said she’s researching why that is, and one possibility has to do with antibodies. She said the Anti-Jo-1 antibody is the most common marker of the disease, but African Americans are more likely than Caucasians to have non-Jo-1 antibodies — which means it’s less likely to be caught.
“I think there’s something different about biology and underlying genetic risk factors for African Americans,” Johnson said.
Another factor in mortality has to do with dark skin. One of the telltale markers of dermatomyositis is a rash, but that’s more difficult to detect for people with darker skin, especially when physicians may not be aware of what to look for because of how rare myositis diseases are — 50,000 to 75,000 in the U.S. are affected by myositis, according to TMA. The association’s analysis shows it takes an average of 3 1/2 years and five doctors to get a correct diagnosis, and not catching a sign as simple as a rash could prolong the wait.
“It just exacerbates something which is already a challenge,” Johnson said. “It’s a rare disease … so there are many physicians who just haven’t had a patient who has myositis.”
Mary McGowan, executive director of TMA, said one of her goals for the organization is to shorten the time it takes to get a correct diagnosis. Johnson, who specializes in pulmonary medicine, said a prolonged waiting period could mean someone with lung issues won’t be able to get off their oxygen support, whereas they may have not needed that in the first place if it was caught sooner.
Darlene Shelton, 55, has polymyositis and couldn’t recall how many doctors she went to before getting her diagnosis in 2013. That was after nearly a lifetime — starting in elementary school — of signs that something wasn’t right with her body. She didn’t have the strength other kids had. In her teens she had foot drop, a condition that makes it difficult to lift the front of the foot. At her worst, Shelton couldn’t lift a one-pound weight.
Shortly after getting her diagnosis, though, doctors told Shelton, who lives in Nashville, Tennessee, she actually didn’t have polymyositis. She said they discounted her pain because she had just come off her medicine. For most of the last six years, then, Shelton wasn’t seeing a doctor or getting medicine for her pain.
“It was so excruciating,” Shelton said of a time her disease flared up in 2016. “… Every time I tried to walk it was so bad. I just wanted to die. That’s how this condition makes you feel when it flares up.”
Shelton ended up in the hospital in January after she was in too much pain to move. She couldn’t even hold a paperback book. Shelton stayed in the hospital for about a week and then went to rehab in a nursing home for about a month. She’s home now and uses a wheelchair and walker to get around, and although she can’t stand for much longer than a minute and sometimes struggles to hold something as light as a cellphone, Shelton is optimistic.
“This disease and being in a wheelchair is not my identity,” she said. “I don’t accept this is who I am. I feel like I will beat this. I’m a strong woman, and I will fight this, and I won’t give into it.”
Contact staff writer Tyler Fenwick at 317-762-7853. Follow him on Twitter @Ty_Fenwick.