Damian’s Journey – IBM
I never thought in my wildest dreams that I would be in a wheelchair.
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‘Dame’ Val takes the challenge of myositis head on
Val Dempsey… “Somebody will walk over to you and say: ‘How are you today, Val?’ And likely if you tell them, they don’t ask again.” Photo: Katarina Lloyd Jones. Myositis refers to a group of rare, incurable and progressive conditions that sees the body’s immune system turn against itself, destroying healthy muscle in the process….
Patient R’s Journey – Necrotizing Myositis
It all began when I was nineteen years old. I had become very tired and suffered from headaches almost every day. I was skipping university, waking up in the afternoon and staying in bed all day. One night I was sitting in the car and felt pain in my left leg, mainly between the crease…
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…
Rachel’s Story
Rachel’s day always starts with a cocktail of medication and a good day is when she’s able to get out of bed and do some ‘normal’ daily living activities. At times, she is profoundly disabled. Days on end unable to move, sit up, stand, walk, shower or change clothes, hold a spoon to eat, hold…
A typical pathway to a rare condition – Patient L
Why am I taking SO much longer to trudge up the hill to the railway station ? Why am I finding pulling down a whiteboard so much harder? Why are stairs getting to be difficult? Why am I having so much difficulty carrying equipment from room to room? Why have I pulled a muscle in…
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…