Inclusion Body Myositis (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.
Whether you are a patient or a physician, we hope to provide the information you need.
Cure IBM believes it’s time for change!
- Time for increased awareness
- Time for prompt and accurate diagnosis
- Time for research
- Time for treatment and a cure
Inclusion body myositis, sometimes called sporadic inclusion body myositis, causes gradually worsening muscle weakness, usually starting after the age of 40 or 50. Many people slowly progress from normal walking, to using a cane, then a walker, and finally a wheelchair over a time period of about 15 years, although this is extremely variable. Hand function worsens. Many people with IBM eventually become disabled, in some cases losing the ability to move their arms and legs, and also the ability to swallow. The age of onset and the rate of progression vary significantly from patient to patient.
The cause is unknown. The disease is characterized by muscle inflammation and muscle degeneration, but it has not been determined if the inflammation causes the degeneration, or if the degeneration causes the inflammation, or if something else starts the disease process.
Scientists and doctors are studying IBM, but they need more support. The disease is little known and underfunded, even when compared with other rare diseases. We have the tools. Research techniques have improved tremendously. Lack of money is the main obstacle slowing research progress. Now is the time to make a difference!
Introduction to Inclusion Body Myositis
What is IBM? Who gets it? How common is it?
The diagnosis of inclusion body myositis is based on symptoms of muscle weakness, physical exam findings, and several additional tests.
Inclusion body myositis has no generally effective medical therapy, but many things can be done to improve the lives of people with IBM.
The Cure IBM Blog
Medicare Seeks Public Comments as it Considers Expanding Benefits to Include Seat Elevators for Power Wheelchairs
Medicare Policy and Wheelchair Seat Elevators Medicare is re-evaluating its policy of denying coverage for seat elevating systems for power wheelchairs, and is seeking public comments. If you live in the United States and have an interest in IBM, your input is needed!...
The IndeeLift The IndeeLift is a lifting device that has now been modified to meet the needs of people with inclusion body myositis. Its primary purpose is to raise people up from the ground after they have fallen, but it has many other uses. The IndeeLift and Falls...
Negative Results The biotech company Orphazyme announced negative results yesterday for the clinical trial of arimoclomol in the treatment of inclusion body myositis (IBM). The drug failed to meet the primary and secondary endpoints which were used to measure success....
My Personal Story
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