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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…
I used to play football and was known for my running speed but, at 43 years old I discovered I couldn’t run. That was in the mid 1990s. Progressively over a few years I realised that I was losing strength. In 1998, I bought a pushbike to try to improve my quads. I would ride…
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…
Head to Health: A website that can help you find information on digital mental health and wellbeing resources across Australia. Types of resources include: phone services, apps, online programs, online forums and digital information resources. It has resources that address lots of different mental health challenges for different ages and backgrounds too. Website link: Welcome to Head…
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…
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…
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SUMMARYADELAIDE MAY 6-8, 2019 The Association’s 3rd National Conference was well attended by 112 Myositis patientsand carers. A very full and intensive program was enthusiastically received.The speakers were outstanding and our Association is so grateful for their expertise,passion for Myositis, commitment to patient support, and willingness to travel longdistances. The topics provided a strong focus…
10 Year Anniversary CONFERENCE REPORT – ADELAIDE 19 – 22 August, 2013 Monday Having met informally at registration and over drinks, our President, Trevor Neumann officially welcomed around 105 attendees, to the conference over dinner at the Arkaba Hotel. Special guests, A/Prof Alan Sturgess, Patron (Rheumatologist St George Hospital Sydney), Bob Goldberg (TMA – Washington), Prof…
2ND NATIONAL CONFERENCE SUMMARYWOLLONGONG 10 – 12 OCTOBER, 2016 The Association’s 2nd National Conference was hugely successful with almost 90 patientsand carers enjoying the beachside location of the Novotel North Beach hotel in Wollongong.The speakers were outstanding. The topics ranged across medical information on Myositisand autoimmune diseases, review of global research, exercise and falls prevention,swallowing…
Nov 2020 A video to raise awareness for Myositis amongst GPs and Allied Health workers, has been produced by Griffith Film School and stars Myositis patients and Dr Robert Henderson Neurologist, Brisbane.
Our founding member of the Myositis Association Australia, Anita Chalmers, was recognised as part of the 2018 Australia Day honours with an OAM for her volunteer work for Myositis. Once diagnosed with Polymyositis in 1999, her volunteer activities in the Myositis Association began and soon extended across Australia and internationally. She forged strong ties with the US Myositis Association. leading to access to US…
Myositis doesn’t stop me ….. Sadly, Jo Morris passed away in 2022 aged 31. She was an amazing young woman who lived a very full and spirited life despite the impacts on her body from Juvenile Dermatomyositis. Jo was a strong advocate for Myositis and for our Association. She is missed by all who knew…
CentroGlide is the leading power wheelchair from Glide Above: Here’s a video of one of our IBMers on his Glide Wheelchair.
Dermatomyositis and Anti Synthetase Syndrome
Myositis Discovery Programme – Breathing exercises and Myositis
