The aim is to educate the public and healthcare community about myositis.
USA: The Myositis Association and its members worked to have the U.S. House of Representatives designate September 21st as National Myositis Awareness Day. This day has been recognized through a Congressional resolution to bring awareness and national attention to this disease.
"Myositis is thought to be an autoimmune disease and shares much in common with other autoimmune diseases like rheumatoid arthritis and lupus. Unlike these diseases, though, myositis is so rare that it often goes for weeks and months without a diagnosis, reducing the chances of a good outcome for new patients. There’s a form that has no known treatment, a form that affects children, a form that causes a painful rash and calcium deposits, and a form that’s accompanied by lung disease. What they have in common is a mysterious weakening of the muscles, appearing first as the inability to rise from a chair, hold your arms over your head, or get up from a fall.
Myositis patients rely on information provided by their specialists and The Myositis Association. The members of TMA plan events all over the country on September 21st to publicize this disease. We hope that increasing awareness will encourage early diagnosis, research and ultimately a cure." FROM TMA SAMPLE LETTER AVAILABLE for you to send to local elected officials.
AUSTRALIA: Myositis Awareness Day events information at The Myositis Association Australia Incorporated (Keep in Touch group)