Support group offers hope for those living with myositis
|

Support group offers hope for those living with myositis

Published in Shepparton News June 14, 2024 With incurable diseases such as myositis, taking care of one’s mind is most important. Having a solid support system of people who have been through something similar, who understand and can help you prepare, is a massive part of that. Myositis is a rare disease where the body’s…

‘Dame’ Val takes the challenge of myositis head on
|

‘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….

Ann’s Story
|

Ann’s Story

Ann Reynolds has a remarkably practical and positive approach to her recent diagnosis of myositis and is now doing all she can to learn about it and share her story. “It’s what I’ve been dealt with, I can’t I do anything about it, but knowing there is support helps;’ she said. Ann had been having…

Mums Story

Mums Story

In her early 40s, my mum began a journey that would alter the course of her life. Slowly, she experienced weakness and overwhelming fatigue, to the point of having to stop work. As she humorously put it, “chairs, stairs, and toilet seats became my worst enemies.” Sadly, as is common with many struggling with uncommon…

Rachel’s Story

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…

Tracy’s Journey – IBM

Tracy’s Journey – IBM

Sporadic Inclusion Body Myositis At the end of 2016, I was changing insurance companies and the new company sent me for blood tests. When the results came back, they immediately said: “we are not going to cover you, your CK levels are too high”. What the heck are CK levels, I wondered? I went off…

Christine’s Journey – Interstitial Myositis

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…

Stephen’s Journey – Statin Induced Immune Mediated Necrotizing Myositis

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…

Ron’s Journey – IBM

Ron’s Journey – IBM

I used to play football and was known for my running speed but, at 43 years old I discovered I couldn’t run. That was in the mid 1990s.  Progressively over a few years I realised that I was losing strength. In 1998, I bought a pushbike to try to improve my quads. I would ride…

Christie’s Journey – Antisynthetase Syndrome with Interstitial Lung Disease and Polymyositis

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…

Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

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…