September 25, 2006

On Monday, September 25, the U.S. House of Representatives approved the goals and ideals of a “National Myositis Awareness Day” to be observed on September 21. In approving the day, legislators passed H. Res. 974, which had been introduced in the House by Representatives Steve Israel of New York and Virginia Foxx of North Carolina.

The proclamation endorsing National Myositis Awareness Day capped a years-long effort by The Myositis Association (TMA), an international non-profit voluntary health agency. Many states and localities across the U.S. have already designated September 21 as Myositis Awareness Day, and celebrate the day with fundraising events, educational sessions, and newspaper interviews with individual myositis patients and their family members.

As the resolution moved through the legislative process, congressional staff members heard from myositis patients and their families. Washington Post Capitol Hill Correspondent Jonathan Weisman spoke out about his four-year-old daughter Alyssa, who has a juvenile form.

“She went from never sitting down to being almost comatose,” Weisman said. After a frightening period with no diagnosis, the child has now undergone emergency hospitalizations and aggressive treatment and is going back to school, but “we live in mortal fear,” Weisman said.

Congressional staff member Cindy Buhl said her search for diagnosis went on for years. “I was called a liar, a hypochondriac, and a whiner,” she said. Buhl recalled getting off the couch each night by dropping to the floor and pulling up. When she finally got the diagnosis, she was elated, despite having a serious disease. “At least I had a name for it and I could form a plan,” she said.

Actor and male model Fabio sent a video to Capitol Hill endorsing Myositis Awareness Day. The international celebrity offered TMA his help because of his close ties to a family friend with inclusion body myositis, a form of the disease that has no treatment.

Myositis is a chronic neuromuscular disease that causes muscle weakness and has several forms. The Myositis Association estimates that there are 30,000 to 50,000 people with myositis in the United States, many of whom have never been diagnosed or properly treated. At the state and local levels, TMA support groups work with government officials to give recognition to this often-debilitating disease. The Myositis Association is a patient support, education, and advocacy group that represents myositis patients here and on every continent. TMA has awarded more than $2 million in research grants and fellowships in the first four years of its research program.

Information about myositis, TMA, and Myositis Awareness Day is on the TMA website.

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