Damian’s Journey – IBM
I never thought in my wildest dreams that I would be in a wheelchair.
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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…
How To Prepare Yourself for Residential High Care
Graeme Eggins is a retired foreign correspondent and magazine publisher has Inclusion Body Myositis (IBM). Please Note: Government policy is in a state of flux, and some of the requirement may change in future. He has kindly provided this detailed guide for use when considering the move to Residential High Care. Graeme lives in high…
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…
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…
George Scott (dec) – IBM
Myositis crept into my world…. George passed away in 2017. He was instrumental in establishing the Victorian Support group – he understood, he cared and he made a difference. In addition to his IBM George had a battle with skin cancer and a brain bleed. George would say to other Myositis patients to take special…
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…
