In the 1970s, Dr. William Shearer made his reputation as the physician who treated young David Vetter, the so-called “bubble boy.” Vetter was a child born with the genetic condition severe combined immunodeficiency (SCID), which required him to live from birth in sterile plastic chambers, because he lacked a functioning immune system. Shearer died at the age of 81on October 9 at his home in Houston. Dr. Shearer lived with the rare disease polymyositis.
The Myositis Association has a Medical Advisory Board of 23 of the world’s most respected medical experts from around the globe available to speak about this rare autoimmune disease of the muscles. These myositis researchers are from the NIH, the Myositis Center at Johns Hopkins University, the Mayo Clinic, and other prestigious American institutions as well as from the Netherlands, France, and Sweden.
Polymyositis is a chronic autoimmune disease of the muscles that causes muscle pain and weakness, difficulty moving and standing, disability, and other symptoms. Patients often face other life-threatening disorders, including interstitial lung disease, antisynthetase syndrome, and a higher risk of cancer and other diseases. It is one of several forms of myositis; others include dermatomyositis, inclusion-body myositis, necrotizing myopathy, and juvenile forms of the disease. Together these conditions affect 50,000-75,000 Americans.
It is ironic that Dr. Shearer, an immunologist, was himself a victim of a disease of the immune system in which his body’s defense system attacked his own tissues, in this case the muscles. There are few treatments for this chronic debilitating disease, and no known cure yet.
The Myositis Association, however, is working to turn the tide on this. TMA is the leading international nonprofit organization committed to support and education for myositis patients and caregivers. In addition to raising money for education and increased awareness of myositis, TMA also works with the leading myositis experts across the globe. Since 2002, TMA has funded nearly $7 million in projects designed to develop better treatments, more effective rehabilitation, and ultimately a cure.
Journalists are invited to seek additional information about myositis at www.myositis.org. For photos, or to set up an interview with a local patient, myositis medical experts, or TMA’s Executive Director, call 882-2189 or email Communications Director Linda Kobert at [email protected].
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