Support group offers hope for those living with myositis

Published in Shepparton News June 14, 2024

With incurable diseases such as myositis, taking care of one’s mind is most important. Having a solid support system of people who have been through something similar, who understand and can help you prepare, is a massive part of that.

Myositis is a rare disease where the body’s immune system attacks itself, destroying healthy muscle tissue and causing weakness. Any muscle in the body can be affected, as well as the heart, lungs, throat, hands and fingers.

Jeanette Moore was diagnosed with inflammatory myositis in 2020. Thinking she was “just getting old” (a common misconception), Ms Moore did not connect her symptoms for years until her GP sent her to Melbourne for a muscle biopsy. “It just slows you down. It’s a very slow progress,” Ms Moore said.

“We all experience different symptoms, but all relate to muscle deterioration and weakness. “All muscles of the body can be affected to various degrees. “Thigh muscles and swallowing are often the first things to be noticed. (Weakened) thigh muscles mean you go down and then can’t get back up,” she said. “It impacts swallowing. Personally, the swallowing causes issues for me.”

Ms Moore, who wasn’t aware of the disease until she was diagnosed, found that connecting with the Shepparton myositis support group made a huge difference.

“We get to talk to one another, and it’s good because when you first get diagnosed, you’ve probably never heard of it and don’t know anybody that’s got it,” she said.

“We can talk to each other and learn from one another and realise how it’s going to go because there’s not a lot of information about it out there.”

The most recent meeting of the group, on May 14 for Myositis Awareness Month, was the second of the year.

The group meets every two months, with members travelling from as far as Bendigo to participate.

Ms Moore wanted to raise awareness about the group as well as the disease, to assure people that they were not alone.

“We all feel like there are people out there who have it but don’t know they have it, and if they have been diagnosed, they need to know there’s a group they can come to and talk to people who have the same issues.

“The more awareness there is, the more likely there will be more research into treatment, and when you’re not known, you don’t get as much research.”

Her advice to people who suspect they have myositis is to visit their GP and push for tests to know for sure.

“People share symptoms, and as you get older, things don’t work the same, so you might not have it. You need to keep at it and push to see people,” she said.

“Some (city) rheumatologists come up to Shepparton every month or so, so you can get appointments up here.”