Inclusion Body Myositis

What is Inclusion Body Myositis?

Sporadic Inclusion Body Myositis (s-IBM) is an inflammatory muscle condition that is characterized by the progressive weakness and wasting of muscles (atrophy). The name was derived from the presence of abnormal bodies containing protein and inflammation in the muscles. s-IBM primarily affects the limbs of an individual, and to a lesser extent, other muscles of the body. (This is not to be confused with the inherited condition Inclusion Body Myopathy which does not have any associated inflammation). For more information about Inclusion Body Myositis click here.

Useful Websites - the Rare Disorders New Zealand website provides information on a number of rare disorders, a directory of support groups, practical advice, health and disability resources, research information, news and issues. - the MDA USA website has an extensive site with plenty of information on any muscular dystrophy conditions as well as research news. - the Myositis Association website provides information on several types of inflammatory muscle diseases. 

Support Groups

There are several Myositis Facebook support groups available. Check out the Myositis Support Facebook group page. There are also pages for Juvenile Dermatomyositis, Polymyositis, Inclusion Body Myositis, and general Myositis groups. Please refer to the Inflammatory Myopathy page for more details.

IBM Support Group 

The IBM Gathering happens approximately three times per year online and is for all members and family nationwide with IBM. These gatherings are held online via Zoom. It is a positive support group where attendees use the space as a forum to share and socialize. Guest speakers attend from time to time. Anyone with IBM or anyone who has family/friends with IBM is welcome to attend. Notes from previous meetings are sent out to members who are unable to attend. For more information, please contact Muscular Dystrophy Northern - [email protected].