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Peter Frampton Found New Purpose After Inclusion Body Myositis Diagnosis

After laboratory testing, the neurologist sat Frampton down and told him he'd initially thought Frampton might have amyotrophic lateral sclerosis (ALS). "But you don't have ALS," the doctor said. "You have IBM [inclusion body myositis]." Like ALS, IBM is a progressive neuromuscular disorder, but unlike ALS, it's not fatal. Further tests, including a muscle biopsy, confirmed the diagnosis.

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Resources

 Peter Frampton Found New Purpose After Inclusion Body Myositis Diagnosis

The rocker says he has a renewed sense of purpose and was inspired to start a research foundation.... He established the Peter Frampton Myositis Research Fund at Johns Hopkins...

Catalyze A Cure

Our unique position in the rare disease arena is that our research is focused entirely on developing a human therapy for inclusion body myositis

Cure IBM

Inclusion body myositis is a rare, little known muscle disease, with no effective drug treatment. Cure IBM is dedicated to inclusion body myositis awareness, education, and research.

Inclusion Body Myositis

This web page presents information on inclusion body myositis. There are two main types; a spontaneous type that just strikes "out of the blue." It is the common type, known as spontaneous inclusion body myositis, and is usually abbreviated as sIBM. The second type, Hereditary inclusion body myopathy (HIBM) is a very rare group of inherited disorders; passed on from parents to children. How the two types may be related is unknown.

Myo-Musings

Having IBM (Inclusion Body Myositis) means coming to grips with a constantly changing life. The perpetual curtailment of activities requires that you rise above the plight. You need to constantly reinvent yourself in order to adapt to yet another limitation and, at the same time, acknowledge the grieving process that comes with these changes.

Papas Blog

In the fall of 2003, I was diagnosed with Inclusion Body Myositis. After having lived a few months with the diagnosis of ALS, my family and I had become adjusted to the fact that I was going to die soon. More than half the people diagnosed with ALS die within the first two years. We were pleased to learn that IBM is not fatal and I would live many more years. We were disappointed to learn that the symptoms of IBM are not that much different from those of ALS, the progression of the disease, however, is much slower.

Johns Hopkins Myositis Center

Unlike other forms of myositis, IBM is approximately two times more common in men than in women.

Muscular Dystrophy UK

Inclusion body myositis (IBM) is a muscle-wasting condition, which causes muscles to become thin and weak. It was recognised as a condition in its own right in the 1960s. It usually occurs in mid to later life and is more common in men than women.

Myositis Support and Understanding Association

Muscle weakness tends to be asymmetric (greater on one side), involving the distal muscles, those furthest from the body’s core. Proximal muscles (closest to the core) may also be involved. IBM typically affects the muscles of the hands, fingers, arms and legs, particularly the thigh muscles (quadriceps), and muscles in the lower legs that move the feet.

The Myositis Association

Inclusion body myositis is unlike all other forms of myositis in terms of symptoms, treatment, and who it affects. Symptoms of inclusion body myositis progress more slowly than the other types of myositis with weakness increasing gradually, sometimes over years. For this reason it is not uncommon for patients to realize that they had been experiencing symptoms for many years before they were diagnosed.

Autoimmune Association

Inclusion body myositis (IBM) is one of a group of autoimmune related muscle diseases known as the inflammatory myopathies, which are characterized by chronic, progressive muscle inflammation accompanied by muscle weakness. The onset of muscle weakness in IBM is generally gradual (over months or years) and affects both proximal (close to the trunk of the body) and distal (further away from the trunk) muscles.

NINDS

There is no cure for IBM, nor is there a standard course of treatment. The disease is generally unresponsive to corticosteroids and immunosuppressive drugs.

NORD

Sporadic inclusion body myositis (sIBM) is an acquired progressive muscle disorder that becomes apparent during adulthood. The symptoms and progression of sIBM vary from one person to another.

Patient

IBM is the most common age-related muscle disease in the elderly and is an incurable disorder leading to severe disability. It is a slowly progressive inflammatory myopathy...

StatPearls

Inclusion body myositis (IBM) is an autoimmune myopathy that occurs mainly in people older than 50 years of age. The pathogenesis is not completely understood, but if thought to involve an interplay between inflammatory and degenerative pathways.