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Myo News

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

In 2020 at the beginning of the Covid pandemic, I was in lockdown and doing lots of walking to maintain some fitness. I was also taking statins for high cholesterol. My muscles and tendons started to hurt. I lost all strength in my legs, hips and eventually my arms and upper torso. When I stopped…

Jill’s Journey – IBM

Posted in Myo Journeys

I first noticed the weakness in my right arm in 2015. Neurologists did tests and thought the problem came from my spine and I even went to see a back surgeon who then sent me back to neurology. After many more tests I was told I had motor neurone disease and had between 6 months…

Christie’s Journey – Antisynthetase Syndrome with Interstitial Lung Disease and Polymyositis

Posted in Myo Journeys

My Myositis story began around Christmas of 2019, when I was 37 years old. I was visiting my in-laws in Bega, and we were surrounded by bushfire smoke. For the first time ever I struggled to walk from the car to the shops without sitting down. I put it down to the smoke but my…

Anita’s Journey – Polymyositis

Posted in Myo Journeys

Looking back , I now realise when it was that I first noticed the symptoms of what turned out to be the start of Myositis. In 1995, I started to find it difficult to walk up the ramp leading to the railway station. By the time I reached the top my legs had begun to…

Planning For The Future
Posted in News & Events, Useful Information
Why Planning for the Future?Living with myositis can bring uncertainty, but planning ahead can provide reassurance, control and peace of mind.Planning for the future is about making sure your wishes are known, your loved ones are supported, and important decisions have already been considered if they are ever needed.
Read More Planning For The Future
Assisted Dying, end of live, Future, Planning, VAD
Australian Governments’ Acknowledge World Myositis Day.
Posted in News
The Myositis Association – Australia undertakes various activities aiming at raising awareness of Myositis in the community. To mark World Myositis Day the MAA wrote to the office of the Prime Minister and each of the State and Territory leaders asking them to acknowledge World Myositis Day. As Myositis is a rare disease, it is…
Read More Australian Governments’ Acknowledge World Myositis Day.
Ian Cooper from the Myositis Discovery Programme discusses exercise for those with Myositis and shares TheraPutty exercise study.
Posted in Exercise, Informative Videos, News, News & Events
Ian brings a wealth of physiotherapy experience form many years of practice and more recently Ian has been a key member of the Myositis Discovery Program and Inflammatory Myopathies Clinic at the Perron Institute in WA. UPDATE: Ian and the team from Myositis Discovery Programme, Murdoch University, Western Australia; and Perron Institute for Neurological and…
Read More Ian Cooper from the Myositis Discovery Programme discusses exercise for those with Myositis and shares TheraPutty exercise study.
Exercise, Guide, Health Information
Myositis Discovery Programme Research Update – July 2026
Posted in News, Research, Uncategorised
The Myositis Discovery Programme is a research group led by Prof Merrilee Needham, based at Murdoch University and the Perron Institute. Our aim is to improve health and outcomes for patients by increasing our understanding of myositis and investigating potential new therapies. Here is the latest Research Update.
Read More Myositis Discovery Programme Research Update – July 2026

Myositis Association Australia

The Myositis Association – Australia Inc is a registered charity, run by volunteers, who have Myositis.
We are here to support and advocate for you, whether you live with Myositis or you are a carer, family member, or friend.
Our goal is to help more people keep in touch, share their experiences and learn practical ways to manage their condition.
We also work to raise awareness of Myositis and to support Australian-based research looking into ways to prevent and treat the disease as well as improving the quality of life for those living with Myositis.

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Myo Journeys

While every person’s experience of Myositis is different, sharing stories helps those on a similar journey realise they are not alone. You’re never alone with us.

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What is Myositis?

Myositis is a group of rare conditions where the body’s immune system turns against itself and destroys healthy muscle instead of building new muscle tissue.
Over time, Myositis can cause significant muscle loss with comparable decline in strength, dexterity and mobility. In extreme cases, Myositis can be fatal when the heart and lung muscles are involved.

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