Damian’s Journey – IBM
I never thought in my wildest dreams that I would be in a wheelchair.
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Patient C’s Story – DM & Antisynthestase
My Journey. I was a happily retired 69 year old woman in around September 2019. My husband and I had just finished a half lap of Australia, from Victoria, through South Australia to the Northern Territory, then across to Western Australia and down the west coast, across the Nullarbor and home to Victoria. I was…
Ann’s Story
Ann Reynolds has a remarkably practical and positive approach to her recent diagnosis of myositis and is now doing all she can to learn about it and share her story. “It’s what I’ve been dealt with, I can’t I do anything about it, but knowing there is support helps;’ she said. Ann had been having…
Tracy’s Journey – IBM
Sporadic Inclusion Body Myositis At the end of 2016, I was changing insurance companies and the new company sent me for blood tests. When the results came back, they immediately said: “we are not going to cover you, your CK levels are too high”. What the heck are CK levels, I wondered? I went off…
Ron’s Journey IBM 2022 – 2025
Note: Ron had generously shared his original MyoJourney from 2022 below. Three years later, he provided an update on his journey. While some readers may find the progression of Ron’s IBM (Inclusion Body Myositis) somewhat distressing, this is his personal story. Admirably, in 2025 Ron continued to maintain a positive outlook and was committed to…
Myositis is gaining awareness this May, with people advocating for better support.
MAA Rare Voices Ambassador Lachy Beckett and MAA Secretary Anita Chalmers are interviewed by WIN TV.
Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis
Patient S – My journey started July 2013 when I was 37 years old. I already had Fibromyalgia. I was diagnosed with that in 1997 and managed that without medication. I worked full time with doing an office job which I travelled to by train. Then walked two city blocks. I began to notice that…
