The Myositis Association wants to call your attention to a rare disease that has gotten almost no coverage: myositis

The Myositis Association wants to call your attention to a rare disease that has gotten almost no coverage: myositis.

Myositis is a rare inflammatory muscle disease that often goes undiagnosed or misdiagnosed. An estimated 75,000 Americans suffer from the disease, which causes extreme weakness, swelling, and muscle damage. On average it takes more than three-and-a-half years and five doctors to receive a correct diagnosis.  

A new analysis released today by The Myositis Association (TMA) shows that nonwhite 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 nonwhite women is 3.5 times higher than in Caucasian women.

We have numerous stories of patients who suffer from myositis (such Elisa Glass, who suffers from dermatomyositis – one of the five forms of the disease), as well as myositis medical experts whom you can interview. We hope you will consider writing about the disease – and its disproportionate impact on women of color – in May, which is Myositis Awareness Month.

TMA’s Medical Advisory Board is made up of 23 of the world's leading myositis researchers from the NIH, the Myositis Center at Johns Hopkins University, the Mayo Clinic, and other prestigious American institutions as well as from the Netherlands, Great Britain, France, and Sweden.

Please see The Myositis Association’s press release, issued today, here.