English-American guitarist, singer, and songwriter Peter Frampton is best known for his hit album “Frampton Comes Alive!” and his upbeat, immersive performances. But he is also known for his efforts in improving myositis awareness. The legendary performer retired from music after he was diagnosed with inclusion body myositis (IBM) nearly four years ago. Since then, he has worked tirelessly to increase the public understanding of what life with myositis is like—and to remind others with this condition that they are not alone.
In addition to donating a portion of his ticket and merchandising sales during his final tour, Frampton established the Peter Frampton Myositis Research Fund at Johns Hopkins. This fund is designed to drive research into IBM and other forms of myositis, as well as pursue a cure. Currently, IBM can be difficult to treat and may not respond well, or at all, to existing therapies. Exercise and physical therapy can help those affected to manage the condition. But research is crucial to identifying potential pharmacological or physical interventions to stop disease progression.
The Myositis Association, a registered 501(c)(3) organization designed to fund research, increase awareness, and improve the lives of those living with myositis, will be granting the 2023 Patient Ambassador Award to Frampton later this year. This award is given to members of the community who have made significant strides in increasing awareness and education around these diseases. According to uDiscover Music, Frampton will receive this award live during the annual Heroes in the Fight Awards Ceremony. This takes place in conjunction with the Myositis Association’s International Annual Patient Conference. This Conference will take place from September 7-10, 2023 in San Diego, CA. Frampton’s award will be given on the third day of the conference.
About Inclusion Body Myositis
Inclusion body myositis is a progressive inflammatory muscle disease characterized by muscle weakness and wasting. The cause of IBM is poorly understood. Doctors believe that some signs point to IBM being an autoimmune disease. While there may be a genetic predisposition to IBM, it is not believed to be inherited. Right now, doctors think that a complex combination of immune-mediated, genetic, and environmental factors come together to cause the disease.
IBM occurs most often in males (though it can occur in females) and in people older than 50 years old. Typically, lifespan is not affected. But many people experience progressive disability within 15 years of diagnosis and may require mobility assistance or other assistance with daily functions. Symptoms, severity, and progression all vary, but people with inclusion body myositis may experience symptoms such as:
- Worsening muscle weakness in the fingers, wrists, and neck
- Difficulty manipulating objects with the hands
- Dysphagia (difficulty swallowing)
- Frequent tripping and/or falling
- Foot drop
- Difficulty climbing stairs or standing from a seated position
- Muscle pain or cramping
