Some stories from our members
Val’s Journey – Polymyositis and Interstitial Lung Disease.
Val Dempsey. Everybody has a story that is significant in their lives and I don’t believe my story is any more significant than any other. But I do accept this is my personal moment and my experience, such as it is. I am grateful to have had a fairly healthy life with nothing outstanding happening…
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
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
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
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…
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…
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