Newswise — February 28 is Rare Disease Day, and The Myositis Association is working together with other rare disease organizations to bring awareness to the challenges of patients who live with conditions that are not well understood.
TMA has a Medical Advisory Board made up of 22 of the world’s most knowledgeable myositis experts available to speak about this rare autoimmune disease of the muscles.
TMA’s medical advisors include 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.
Quick facts:
- 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.
The Myositis Association is committed to support and education for myositis patients and their caregivers, increasing awareness of myositis throughout the community, and funding myositis-related research.
Journalists are invited to seek additional information about myositis at myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s Executive Director, call 434-882-2189 or email [email protected].
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