In an interview with journalist Anthony Mason on CBS Saturday Morning, legendary guitarist Peter Frampton revealed that he has been diagnosed with inclusion body myositis (IBM). The Myositis Association (TMA) appreciates
“Peter Frampton’s candid interview today provided inspiration and hope to the thousands of IBM patients across the country,” says John McClun, chair of TMA’s Board of Directors and an IBM patient himself. “His message—‘It’s not life threatening, it’s life changing’—is a most powerful antidote for the fear and loss experienced by those of us who live with this disabling condition that has no treatment and no cure.”
Across the country, thousands of men and women are affected by IBM, a rare autoimmune condition and the most common acquired myopathy in patients over the age of 50. As Mr. Frampton described, some of the first signs of IBM are falling, difficulty getting up from a chair, and weakened grip. This muscle weakness progresses slowly, causing many patients to blame their increasing difficulty with climbing stairs or grasping objects as “just getting older.” It is also not uncommon for an injury from a fall to be the final straw that sends them to the doctor.
TMA is the leading international organization committed to the community of people with myositis, their care partners, and family members. The nonprofit provides patient education and advocacy, facilitates patient support groups nationwide, hosts an annual patient conference, engages the medical community in educating physicians about these rare diseases, and funds research into the causes, treatments, and eventual cures for myositis diseases.
TMA Executive Director, Mary McGowan says, “
TMA is supported by a Medical Advisory Board made up of 23 of the world’s most preeminent myositis experts. This distinguished group currently includes three physician researchers from Johns Hopkins Myositis Center in Baltimore. Mr. Frampton’s personal physician there, Dr. Lisa Christopher-Stine, is a former TMA medical advisor and a current TMA-funded researcher.
In the coming week, TMA will be on Capitol Hill as part of Rare Disease Week. Myositis patients and care partners will be meeting with legislators to advocate for increased research funding for myositis diseases, including IBM.