courtesy of J.J. Elliott
The Los Altos area myositis support group includes, from left, residents Cathy Anderson, Kitty Trejo, Steve Anderson, Marti Wright, Carla and Richard Stevenson and Janis and Gary Tjader.
Imagine the fear and isolation of being diagnosed with a disease so rare that most doctors only see a few cases in their entire careers, if at all. Now imagine the comfort and relief in finding fellow sufferers not just in your state or region, but also in your own community. That’s been the case for a group of local residents diagnosed with a form of myositis, a muscle-degenerative disease linked to autoimmune disorders.
Myositis and its different forms – dermatomyositis, polymyositis and inclusion body myositis – affect 50,000-75,000 adults and children in the U.S. Thanks to The Myositis Association (TMA) – founded in 1993 by Betty Curry, who identified the need for widespread information about the rare disease – people are finding each other and offering much-needed help and support. In addition to offering free membership, TMA publishes online and print materials for patients and physicians, sponsors support groups and organizes an annual patient conference that connects international myositis experts with the general medical and patient communities.