Some stories from our members
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…
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…
Patient Y’s Journey – Dermatomyositis
It is said that stress plays a large part in auto-immune disease. There were three stressors in my life – the death of my Father, the death of my first dog, and a bad diet. My DM kicked in immediately after Dad died – I was having a swim the day after his funeral, and…
Patient D’s Journey – IBM
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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…
Jo Morris (dec) – Juvenile Dermatomyositis
Myositis doesn’t stop me ….. Sadly, Jo Morris passed away in 2022 aged 31. She was an amazing young woman who lived a very full and spirited life despite the impacts on her body from Juvenile Dermatomyositis. Jo was a strong advocate for Myositis and for our Association. She is missed by all who knew…
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