Department: Ask the Experts
Q One of my family members has been diagnosed with inclusion body myositis. Can you tell us something about this disease and how best to cope with it?
A Inclusion body myositis is one of a group of diseases known as the inflammatory myopathies, which involve chronic muscle weakness and inflammation. Inclusion body myositis affects the ability to grip objects, walk, and sometimes swallow. The exact cause of the condition is unknown, but some researchers believe it's caused by an attack on muscles by the body's own immune system and a poorly understood deterioration of muscle.
Although the onset is gradual and the disease usually progresses slowly, we haven't yet identified any therapies that reliably halt it, and there is no standard treatment. However, patients and families often benefit from being under the care of attentive physicians who specialize in neuromuscular disorders. Your primary care physician can refer you to such an expert. Meanwhile, researchers are working hard to understand the nature of inclusion body myositis. In addition, learning about the disease usually gives people a greater sense of control. Information is available through books and several Web sites, including mine at s-ibm.org.