Some stories from our members

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

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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…
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Ron’s Journey – IBM

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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…
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Jill’s Journey – IBM

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

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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…
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Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

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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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