Note: Ron has generously shared his original MyoJourney below. Now, three years later, he has provided an update on his journey. While some readers may find the progression of Ron’s IBM (Inclusion Body Myositis) somewhat distressing, this is his personal story. Admirably, Ron continues to maintain a positive outlook and is committed to sharing his…
LAST month was dedicated to raising awareness of a progressive, currently incurable and poorly treated group of rare conditions commonly known as Myositis. Myositis is the term used to describe inflammation of the muscles, and has a number of different forms. The majority suffer from Inclusion Body Myositis (IBM) for which there is no cure…
Dr Jennifer Mowbray, an Emergency Physician, shares her experience as a patient now dealing with a diagnosis of Immune‐Mediated Necrotising Myositis. Jennifer has also kindly shared her story she recorded while decreasing her doses of prednisolone. Read Jenny’s blog here
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,…
At 48, I had it all. My career was at an all-time high, travelling nationally andinternationally, I was meeting all my life goals. A mother, a grandmother, a wife, amanager, President of a volunteer organisation, Board member and Director for variousorganisations and a co-owner of a small business with my Husband. Life was perfect, Iwas…
I’m a busy and relatively healthy 69 year old living on the Sunshine Coast. My husband and I have shared a very happy life together since we were 16 and 18 years of age. We live an ideal lifestyle. Our home is a wonderful apartment with ocean views and we have our 2 fantastic children…
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…
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 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…
MAA Rare Voices Ambassador Lachy Beckett and MAA Secretary Anita Chalmers are interviewed by WIN TV.
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 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…
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…
I never thought in my wildest dreams that I would be in a wheelchair.
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…
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 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…
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…
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…
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…
