Rare Disease Day is February 28. During the month of February, The Myositis Association (TMA) and other rare disease organizations are encouraging those who live with rare diseases like myositis to Celebrate Your Rare by speaking out about the challenges they face and the need for more research into the causes, treatments, and possible cures for these diseases.

Myositis is a rare muscle disease that affects between 50,000 and 75,000 individuals in the US. By definition, any disease affecting fewer than 200,000 people is considered rare. But myositis is one of more than 7,000 rare diseases that collectively affect more than 30 million people in this country. That’s more Americans living with a rare disease than all of those who have either HIV, heart disease, or stroke. Most rare diseases are not well understood, and most, like myositis, have no cure.

TMA’s Medical Advisory Board includes 23 of the world’s most knowledgeable myositis experts from the NIH, the Myositis Center at Johns Hopkins University, the Mayo Clinic, and other prestigious American and international institutions. These myositis researchers and clinicians are available to speak about this rare autoimmune disease of the muscles.

Quick facts about myositis:

  • Myositis includes dermatomyositis, polymyositis, inclusion body myositis, and juvenile forms of the disease.
  • Myositis causes severe muscle pain and weakness, difficulty moving and standing, chronic disability, debilitating skin rashes, and other symptoms.
  • Patients face other life-threatening disorders, including interstitial lung disease, antisynthetase syndrome, other overlapping autoimmune conditions, and a higher risk of cancer and heart disease.
  • One rare form of myositis called necrotizing myopathy can be caused by statin drugs.
  • On average it takes more than three-and-a-half years and five doctors to correctly diagnose an autoimmune disease.
  • Myositis is challenging to diagnose and difficult or impossible to treat.
  • Myositis can be an adverse effect of immune checkpoint inhibitors used for cancer treatment.

About The Myositis Association

TMA is the leading international organization committed to those who live with myositis, their care partners, and family members. A member-supported non-profit organization, TMA provides patient education and advocacy, facilitates patient support groups, hosts an annual patient conference, engages the medical community in educating physicians about these rare diseases, and funds research into the causes, treatments, and eventual cures for myositis diseases. 

Journalists are invited to seek additional information about myositis at www.myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s Executive Director, call TMA’s Communications Director Linda Kobert at 434-882-2189 or email [email protected].