Damian’s Journey – IBM

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…

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…

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…

My Journey. I was a happily retired 69 year old woman in around September 2019.  My husband and I had just finished a half lap of Australia, from Victoria, through South Australia to the Northern Territory, then across to Western Australia and down the west coast, across the Nullarbor and home to Victoria. I was…

Looking back , I now realise when it was that I first noticed the symptoms of what turned out to be the start of Myositis. In 1995, I started to find it difficult to walk up the ramp leading to the railway station.  By the time I reached the top my legs had begun to…

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…