Patients and families gather to gain more awareness, knowledge about myositis

Reviewed by James Ives, M.Psych. (Editor)Aug 29 2018

In early 2015, Mike Matthews, a teacher, social worker, and counselor for the State of Kentucky, experienced a constellation of apparently unrelated health problems that doctors could not diagnose. He lost more than thirty pounds, had trouble swallowing and speaking, developed a rash over his knuckles and other parts of his body, and experienced extreme muscle weakness and fatigue. During that very difficult time, he was unable to work or pursue his usual active lifestyle. It took two years before a doctor in Louisville diagnosed him as having dermatomyositis, one of the forms of a group of rare autoimmune muscle diseases known as myositis.

Nearly everyone who is diagnosed with myositis has never heard of it, and most will never meet another person who faces the challenges they live with every day. That's why The Myositis Association (TMA) hosts an Annual Patient Conference: to help people like Mike learn about their disease and how they can still live life to the fullest despite its challenges.

This year, TMA hosts its Annual Patient Conference at the Louisville Marriott Downtown on September 6-9. With more than 500 myositis patients and family members in attendance, this conference promises to be the largest in TMA history.

At the Conference, participants may choose from more than 80 sessions offering information on medications, research, exercise, diet, and coping. These presentations will be led by myositis experts from the University of Louisville, Johns Hopkins University, the Mayo Clinic, the NIH, and other prestigious American medical institutions, as well as researchers from the Netherlands, France, Great Britain, and Sweden who will share the growing body of knowledge about myositis. Just as important, the TMA Patient Conference is an opportunity for those living with myositis to meet others with similar symptoms and challenges and share hard-won insights and coping strategies.

Myositis is a diagnosis that includes dermatomyositis, polymyositis, necrotizing myopathy, and inclusion body myositis. Patients cope daily with a number of challenges ranging from muscle weakness and painful rashes to complete disability. They also face a number of other life-threatening disorders, including interstitial lung disease, antisynthetase syndrome, and a higher risk of cancer and other diseases.

Now celebrating its 25^th Anniversary, The Myositis Association is an international nonprofit organization committed to support and education for myositis patients and caregivers, increasing public and physician awareness of myositis, and funding for myositis-related research.

TMA has a Medical Advisory Board made up of 22 of the world's leading myositis researchers. Most of these experts will be in Louisville for the conference to not only educate patients but their medical colleagues as well. Local health care professionals, including medical trainees, are welcome to attend a free Myositis Symposium on Friday, September 7, from 10:30am to 3pm, by registering in advance by email: [email protected].

Myositis patients, their care partners, and families are invited to register in advance for the patient conference on TMA's website, www.myositis.org, or in person at the Marriott on Thursday, September 6, after 10am.