Understanding myositis and its effect on Black women

By Nisa Islam Muhammad -Staff Writer- | Last updated: Jun 4, 2019 - 1:08:16 PM

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Kaniah Gunter thought she was suffering from a severe allergic reaction. It was just a rash. She went to the doctor and was given high doses of medication. Then her eyes began to swell. They became so swollen her face was unrecognizable.

“Then I started having heavy breathing and heart palpitations whenever I went up and down the stairs,” she told The Final Call. “I didn’t know what was wrong.”

Most people with similar symptoms go improperly diagnosed. Ms. Gunter’s doctors in Norfolk, Va., diagnosed her in 2007 with dermatomyositis, a rare inflammatory disease of the muscles. That’s the good news. The bad news is she suffered with weight loss, her skin turned yellow, and she endured stabbing pains until 2011.

“I was wasting away. The doctors told me to get my affairs in order. I went from 175 pounds to 125 pounds. I couldn’t swallow, couldn’t open doors, couldn’t dress properly or fix my children’s breakfast. I felt like I had been hit by an 18-wheeler,” she continued. Doctors in Norfolk were at a loss for words, she explained.

“On top of all of that I had a newborn and a five-year-old. My parents and my sister had to come and take care of me. It took three to four years for the doctors to refer me to the myositis center in Baltimore. A resident from Johns Hopkins looked at me, said ‘this is rare, and she needs to be referred.’”

An estimated 75,000 Americans suffer from myositis, a chronic, debilitating disease, yet many do not know it or are misdiagnosed with other, more common, autoimmune diseases. Often even doctors are not aware that muscle weakness, pain, extreme fatigue, and a characteristic rash may be signs of myositis.

Delays in diagnosis can be catastrophic in terms of disability, long-term physical damage, and even death. This is especially significant for Blacks and women of color.

“Many patients think symptoms, like falling or feeling fatigued, are just part of getting older,” Mary McGowan, executive director of the Myositis Association told The Final Call. “We need to raise awareness about this disease. Patients—especially African American women who are more likely to suffer from the disease—need to know that these warning signs should not be ignored.”

“Early diagnosis and prompt treatment result in better patient outcomes. It is imperative that they seek a diagnosis and care as soon as they experience symptoms and that they’re educated enough about this rare disease to raise it with their doctors. There are significant differences in women of color whose rashes are misdiagnosed or missed completely.”

The Myositis Association released research in May that showed non- White women are twice as likely to die than others with the disease, and they are four times more likely to die than White men with the disease. In childbearing years (ages 15-34), mortality in non-White women is 3.5 times higher than in White women. May is Myositis Awareness Month.

“We are on a mission to raise awareness about myositis, and in particular among the communities it affects most—women of color,” Ms. McGowan said. “Patients need to be educated, as do doctors who are on the front lines of making an accurate medical diagnosis, including dermatologists, rheumatologists, and pulmonologists.”

Ms. McGowan wants Black women to know the signs of myositis including symptoms of weakness, swelling, and muscle damage that often appear gradually. “Early, often missed, signs of myositis include, trouble getting up from a chair, climbing stairs, or grasping objects with their hands, people fall or start tripping, they have difficulty reaching their arms over their head, or difficulty swallowing,” she said.

Myositis experts often say that dermatomyositis is the easiest form of myositis to recognize. In addition to extreme weakness and fatigue, patients often present with an obvious rash that is distinctive for the disease.

On Blacks with darker skin and other people of color, the red or purple blotchiness over the shoulders and chest or around the eyes may not be as easy to identify as it is on lighter skin.

“Since women of color with dermatomyositis are at increased risk for mortality, early access to diagnosis and treatment is particularly important,” explained Michael Walsh, executive director of the Derma Care Access Network.

The disease is highly variable and has been classified into a number of forms, including dermatomyositis, polymyositis, necrotizing myopathy, sporadic inclusion body myositis and juvenile forms of myositis.

There is a wide array of medications for treatment which vary from patient to patient but for some forms of the disease there are no treatments available yet. Exercise, physical therapy and self-care therapies are also recommended according to