Thousands of Americans suffer from a chronic disease and some may not even know it. That's one of the reasons that The Myositis Association established Myositis Awareness Month in May. When myositis patients and their families -- nationwide and all over the world -- draw attention to this group of rare, incurable muscle diseases through the month, they educate the community and increase the likelihood of faster diagnoses, better treatments, and ultimately a cure. Myositis Awareness Month also helps inform newly-diagnosed patients and their families that TMA offers peer support and timely information about coping, current research and access to myositis experts.
On average it takes more than three years and five doctor’s visits to receive a correct autoimmune disease diagnosis. Myositis patients—and frantic parents of severely weakened children—find a great deal of damage is done during this wait. Raising awareness of myositis, its symptoms, and treatments will help these patients and families.
“Our biggest challenge is to create awareness for the disease, so patients can seek an accurate diagnosis,” says Dr. Dana Ascherman, University of Miami School of Medicine. “Because damage caused by myositis can occur in the first few years, early diagnosis means early treatment to improve quality of life.”
While there is no cure yet for myositis, treatments are available. They include medications, exercise, lifestyle adaptation and support from patients with the same diagnosis. Starting a treatment plan early is essential to ensure the best possible outcomes and highest quality of life.
“For any rare disease, particularly one as rare as myositis, creating public and physician awareness of the disease ensures quicker diagnosis and a better outcome for the patient,” says Bob Goldberg, Executive Director of The Myositis Association. “By asking our members and friends to spread awareness, we hope to get the word out about myositis to more people than ever before.”
About Myositis
Myositis is one of 80 autoimmune diseases affecting nearly 50 million Americans. It is one of the rarest of the autoimmune diseases, and its different forms — dermatomyositis, polymyositis and inclusion-body myositis — may affect 50,000 - 75,000 adults and children in the United States, although precise numbers are not known. Each of the three forms causes weakening of skeletal muscle, often beginning with the shoulders and thighs. The average time from onset of symptoms to diagnosis is between three to four years. These critical years are when debilitating damage can take place.
About The Myositis Association (TMA)
The Myositis Association provides information and support to the myositis community and physicians who treat patients with the disease. TMA also funds researchers seeking better treatments and a cure for the incapacitating disease. TMA’s member and patient support network spans the globe.
The mission of TMA is to provide support to myositis patients and their families, provide connections between TMA’s Medical Advisory Board and general medical and patient communities and increase funding to support myositis research. If you feel you or a loved one are experiencing symptoms of myositis, consult with your physician for diagnosis, and visit www.myositis.org to find a myositis specialist and for more information and support to help manage the disease.
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For more information or to arrange an interview with a TMA medical advisor, contact:
Angel Waldron, CharityWise
310-953-4314 x703
Myositis Awareness Month 2016 is sponsored in part by a grant from
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Original Source: May Is Myositis Awareness Month
