September 14, 2006
Fabio and patients with a chronic disease called myositis will speak to congressional staff members about this rare muscle disease. Most likely none of the staff hearing them on September 21–designated as Myositis Awareness Day in many states–has any experience with this little-known and poorly understood disease.
Internationally-known male model and actor Fabio does. He will speak of a close personal friend who is prominent in Europe and has a form of myositis, which results in muscle wasting and has no treatment or cure. Fabio will talk about the need for more research into this debilitating disease, now the most common muscle disease of people over 50 years of age.
Myositis is a chronic neuromuscular disease that causes muscle weakness and has several forms. Because it is rare, physicians often fail to diagnose it. Myositis patients hope that greater awareness and patient and physician education from Myositis Awareness Day will lead to earlier diagnosis and more effective treatment.
The Myositis Association estimates that there are 30,000 to 50,000 people with myositis in the United States, many of whom have yet to be diagnosed or are not being properly treated. The Myositis Association is a patient support, education and advocacy group that represents myositis patients on every continent. TMA has awarded more than $2 million in research grants and fellowships in the first four years of its research program.