Damian’s Journey – IBM
I never thought in my wildest dreams that I would be in a wheelchair.
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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…
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…
Learning to Live with the unexpected
When you graduate high school, you ask yourself the question: “What’s next?” That uncertainty of adulthood is scary—yet exciting. For me, though, it sometimes feels like the “What’s next?” was decided for me. In July 2023, I decided to take a gap year and work in Queenstown, New Zealand. When I first arrived, my bright-eyed,…
Christine’s Journey – Interstitial Myositis
I’ve lived with Myositis for approximately 17 years. After taking 6 years to achieve a diagnosis, I understand the need for increased awareness and education for Myositis. My first symptoms were subtle. Perplexing reduced endurance for walking, difficulty rolling over in bed, getting out of chairs and fatigue over several years, eventually led to an…
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…
‘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….
