October 15, 2007
LaShan Davis, featured this week on The Discovery Channel‘s Mystery Diagnosis, spent three 10-hour days filming the segment and reliving the terrifying time she spent waiting for her “mystery disease” to be diagnosed. Davis, a retired Federal employee, has polymyositis. Although she still struggles with myositis-induced weakness and lung involvement, Davis said the time and energy spent on her national television debut was worthwhile.
“This is one way I can try to help other people avoid some of this,” said Davis, who lives in Richmond, Virginia. She noticed mysterious symptoms of weakness, night sweats and shortness of breath while pregnant with her daughter, Sidney, who also appears in the segment. Davis is shown with her rheumatologist, Dr. Lisa Christopher-Stine, in scenes at Johns Hopkins Medical Center, in her home, and in the studio. Once diagnosed and treated, her health improved greatly. Watch Davis’s riveting story throughout the next week. Times vary, so consult local listings.
Polymyositis is an autoimmune disease, like rheumatoid arthritis, lupus, and psoriasis. It is often misdiagnosed, because it tends to begin slowly, with weakness worsening so gradually that people sometimes think they’re just out of shape, or “getting old.” It is one of a family of rare diseases that are particularly elusive and difficult to diagnose.
Another form of myositis, inclusion body myositis, affects people older than 50 and has no effective treatment. Healthy muscle fibers disappear as inflammatory cells attack them, and swallowing becomes difficult as throat muscles weaken. A third form of myositis, dermatomyositis, attacks the blood vessels around the muscles and results in a rash as well as muscle weakness. And a juvenile form causes severe weakness and other complications in children. Parents report watching their school-age children revert to crawling as muscles become too weak to support their bodies.
The Myositis Association began in the spare room of Betty Curry, an inclusion body myositis patient who was frustrated by the lack of information about her disease. With a short list of names from the National Institutes of Health and a couple of volunteers, she began putting myositis patients in touch with each other and sending out information via newsletters, emails and, eventually, national conferences.
The Myositis Association celebrates its 15th anniversary in 2008. It has grown from an organization with a handful of members into an international organization that funds research, sponsors support groups, educates physicians, and advocates on behalf of patients suffering from myositis and other autoimmune diseases. TMA reaches out to help inform those struggling with myositis and those trying to determine if their ” mystery diagnosis” is myositis. Facts about myositis and its treatment can be found on The Myositis Association web site at https://www.myositis.org; or call 800-821-7356.
View Part I of LaShan’s story.
View Part II of LaShan’s story.