Inflammatory Myopathies

Myopathy is a term used to describe muscle disease. The inflammatory myopathies are a group of diseases that involve chronic muscle inflammation, accompanied by muscle weakness. Another word for chronic inflammation of muscle tissue is myositis.

Muscle inflammation may be caused by an allergic reaction, exposure to a toxic substance or medicine, another disease such as cancer or rheumatic conditions, or a virus or other infectious agent. The chronic inflammatory myopathies are idiopathic, meaning they have no known cause. They are thought to be autoimmune disorders, in which the body’s white blood cells (that normally fight disease) attack blood vessels, normal muscle fibers, and connective tissue in organs, bones, and joints.

The three main types of chronic, or persistent, inflammatory myopathy are polymyositis, dermatomyositis, and inclusion body myositis.

Useful Websites

• The Myositis Association (TMA) – for all things myositis

• Cure JDM – specifically for Juvenile Dermatomyositis (JDM)

Facebook Pages & Groups

• Myositis New Zealand – This is a place for people to connect with others in New Zealand with myositis. It is a place for the sharing of information and stories, and a place within which people can support each other.

• Myositis Association Australia – The official Facebook page of Myositis Association Australia.

• The Myositis “Ramblers” – a keep in touch group for all with a connection to myositis. This is a closed group.

• Dermatomyositis and Polymyositis Patients – for DM and PM patients ONLY. Message an admin explaining that you have PM or DM, and they will add you to the closed group (MDA Member Pip McLean is an admin for this group).

• Juvenile Dermatomyositis (JDM) Parents and Caregivers – This group is only for parents and those who actively care for a JDM child.

Other recommended groups

• Inclusion Body Myositis Support and Understanding – this group is for patients. You will be added and then asked what type of myositis you have. This is a closed group.

• JDM Warriors – for all JDMer’s, their families and their supporters – a safe place for kids to post (run by a man called Brandt Stebbins who has JDM). This is a closed group.

• Myositis Caregivers, Family & Friends Support – an English-based group that welcomes international members. This is a closed group.

• Myositis Canada – a Canadian-based group that welcomes international members. This is a closed group.

• Inclusion Body Myositis Caregivers – this is a closed group for primary caregivers only.