March 29, 2007

Most people have never heard of myositis, a chronic muscle disease that strikes children and adults with symptoms like muscle weakness, inflamed skin, and frequent falls. Because myositis is so rare, patients often do not get a correct diagnosis and appropriate treatment. Myositis, an inflammatory autoimmune disease, affects about one in 100,000 people in this country.

Physicians believe the number who have the disease is growing, and one form, inclusion body myositis, is the most commonly-diagnosed muscle disease of people older than 50. Two firefighters who were responders at ground zero on September 11, 2001 and a nuclear activist who grew up near ground zero in the Nevada desert have all developed polymyositis, one form of the disease that doctors believe may be triggered by toxins. These patients are presently battling for compensation of their health care expenses resulting from these exposures and to spare others from the same fate.

Some recent developments have increased public knowledge of this rare disease, and members of the health media have taken the lead in providing information to those concerned and confused about autoimmune diseases.

  • An article in The New York Times on March 27 discussed the possible connection between some forms of myositis and cancer, an intriguing avenue for study of how the immune system responds and changes.
  • A Good Morning America story aired on March 29, talking about the difficulty of diagnosing myositis because of its complex symptoms and tendency to mimic other diseases.
  • A health segment exclusively devoted to myositis in adults aired on The Retirement Living Channel in January, 2007 and is available on DVD from The Myositis Association.
  • A new book, Myositis and You, is available now from The Myositis Association. The book is the first of its kind, offering a comprehensive guide to all facets of the juvenile forms of myositis. The book has dozens of expert contributors and is written in easy-to-understand layman’s terms.
  • A new clinic, the Johns Hopkins University Myositis Center, opened in March, with “one-stop shopping” for patients who formerly had to go from lab to clinic to pharmacy and back again. The new Center on the Hopkins Bayview campus in Baltimore will improve efficiency and quality of care by placing multiple specialists in the same room every week to answer questions and treat myositis patients.
  • The Myositis Association, the non-profit organization devoted exclusively to myositis education, research, support, and advocacy, funded research projects totaling $700,000 this year to study braces for weak thigh muscles, the importance of diet and exercise for the immune system, gene therapy, and the possibility of new myositis drugs shared from research into Alzheimer’s Disease.

Experts are available to discuss the Johns Hopkins clinic, Myositis and You, myositis research, and TMA’s public education program.

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