Myositis refers to a group of rare, incurable and progressive conditions that sees the body’s immune system turn against itself, destroying healthy muscle in the process.

According to the Myositis Association Australia (MAA), inclusion body myositis is the most common form of myositis, but there is also dermatomyositis, polymyositis, necrotizing myositis, antisynthetase syndrome and juvenile forms of myositis.

It is unknown what causes myositis, however the conditions are classified as autoimmune diseases because the person’s immune system is attacking their own tissue.

An extremely rare condition, it affects an estimated one in 100,000 Australians, including Val Dempsey, of Narrabundah, now Rivett, who has been living with myositis for more than two decades.

The 2022 Senior Australian of the Year, Dame of St John’s, former nurse and volunteer with St John’s Ambulance, Val hasn’t let myositis get in the way, but says it’s high time more people learnt about the condition. 

“In the year 2000, I joined the staff and the kids on the ward playing softball,” she says. 

“And I hit the ball and I started to run and I smashed both my quads, they ruptured, just in that instant moment. 

“And I thought: ‘That wasn’t too good, what happened there?’” 

She says she was eventually able to see a rheumatologist who then sent her for further testing.

“I did the tests. Yuck. Bloody awful, stick needles in your arm, electric shocks, muscle biopsies, blood tests. 

“Got through that and she rang me at home and she said: ‘Are you sitting down?’ 

“She said: ‘The first thing you need to know Val, you do not have cancer, but I need to tell you, you have an incurable muscle degenerative disease. 

“Well, I didn’t hear anything after that.”

Val says symptoms of myositis that people present with can include fatigue, issues with grip, increase in falls, inability to stand unassisted, choking and incontinence.

However, because of this broad range of symptoms, myositis is frequently misdiagnosed, often as motor neuron disease, says Val.

Some collection of symptoms can be treated by a GP, too, she says, but because they don’t associate those symptoms as being myositis, the opportunity for diagnosis is prolonged.

Val says this is a major issue, because the earlier the diagnosis, the easier it is to avoid serious muscle damage, as a patient can start taking steroids or immunosuppressants straight away.

Even though it is incurable, Val says there are ways to manage myositis, with exercise being the key part.

“What we’ve discovered, and what we’ve all learned from international conferences and talking to the researchers and all the people that are working their butts off to make our life a lot easier, […] if you don’t use it, you’ll lose it,” she says.

“So, there is the absolute need for people with myositis to develop an exercise regime. 

“Even if you’re in a wheelchair, your exercises might be lifting your head, raising your toes, it might be moving your arms, but if you fail to do that this week, you can’t do it next week.”

Val says one of the most difficult things about living with myositis is the mental health difficulties that come with having an autoimmune disease.

“Somebody will walk over to you and say: ‘How are you today, Val?’ And likely if you tell them, they don’t ask again.

“It’s just human nature in many ways. For a lot of people […] they can’t help you and it makes them feel uncomfortable, so they may not ask you next time, or you’ll find their visits are getting less and less and less.” 

Val says the other thing she finds extremely frustrating is the complete lack of awareness about myositis, even amongst those in the medical profession. 

“I’m grateful for any of the people who step forward and challenge their knowledge to know more about myositis and about degenerative diseases, because it’s not for us to educate them about what’s wrong with us,” she says. 

“I always say, if you’re in the medical profession, or you’re in an associated allied healthcare role, your role is to understand and listen to your patients, and then educate yourself about what they’re telling you.

“Because the people who are not listening and presume, they really set back the patients with these diseases.”

May is myositis month, find out more at myositis.org.au.