Newswise — “Resilience and Recovery” is the theme at The Myositis Association’s (TMA) 2016 Annual Patient Conference September 1-4 at the Hilton New Orleans Riverside. The theme is both a tribute to the city of New Orleans and to people with myositis, who cope daily with challenges ranging from muscle weakness and painful rashes to total disability.
For patients diagnosed with this rare autoimmune disease, however, there’s nothing easy about it. Myositis takes many forms, including dermatomyositis, polymyositis and inclusion-body myositis. Patients also face a number of other life-threatening disorders as well, including interstitial lung disease, antisynthetase syndrome and a higher risk of cancer and other diseases.
On average it takes more than three-and-a-half years and five doctors to correctly diagnose an autoimmune disease. For patients experiencing the debilitating muscle weakness and pain of myositis, this delay can mean the difference—literally—between life and death. Raising awareness of myositis, its symptoms and treatments is part of the mission of The Myositis Association and this Annual Patient Conference.
At the conference, hundreds of patients with myositis will come together to learn from the world’s experts about the various forms of the disease. Physicians from Johns Hopkins University, the Mayo Clinic, the NIH and other prestigious American institutions will be joined by their colleagues from the Netherlands, Great Britain and elsewhere to share the growing body of knowledge about myositis.
Much of this research is the result of TMA’s ongoing effort to improve understanding of this disease that is challenging to diagnose and difficult or impossible to treat. Since 2002, TMA has funded over $5 million in projects designed to develop better treatments, possible prevention, more effective rehabilitation and ultimately a cure.
At the conference, patients and families will choose from more than 70 presentations on a variety of topics, including medications, research, exercise, diet and coping. Just as important, however, they’ll meet other people with similar symptoms and challenges and share hard-won insights and strategies.
TMA membership is free and provides myositis patients with information, support and access to the international myositis authorities on TMA’s medical advisory board. Most of those experts will be in New Orleans for the conference and, in addition to presentations to patients, they will meet separately to share information at a Myositis Symposium on Friday, September 2, from 10:30 a.m. to 3:30 p.m. Physicians, scientists and medical trainees are invited to attend the symposium and can register in advance by emailing [email protected].
Myositis patients, their caregivers and families are invited to register in advance for the patient conference on TMA’s website, www.myositis.org, or in person at the Hilton on Thursday, September 1, after 10 a.m.
Journalists are invited to attend any conference activities. Find more information about myositis and the conference at myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts or TMA’s executive director, call the above mobile numbers or email [email protected].