Myositis month presented an opportunity to reflect

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 or treatment. One in every 100,000 people is thought to have the condition, with the average age of onset just 50 years old.

The Myositis Keep in Touch Group started in 2003 with 12 members. It has grown over the years and as a result of this, the group became incorporated in March 2007, taking the name Myositis Association-Australia Incorporated.

In 2023 The Myositis Association – Australia Inc had grown to over 470 members and celebrated its 20th anniversary of “Keeping in Touch”. The organisation has set up groups in Sydney, Perth, Brisbane, Adelaide and Melbourne, as well as a number in regional areas, in all states.

Membership is now 650. One of the association’s key function’s is putting newly diagnosed patients and carers in touch with others to share experiences and provide support.

Long-time Tyabb resident, Carol Crook has been living with Myositis since being diagnosed in 2017. “After I retired, I led an active life. I joined an exercise class, played golf, and joined a walking group,” said Carol. “I’d been experiencing muscle weakness but just brushed it off as ageing. “It wasn’t until I was at one of my exercise classes, and couldn’t get up off the floor that I realised there may be a more serious problem. I realised I needed to seek help.

“My GP put me on an exercise routine to build strength, but when that didn’t help, I was referred to a specialist.” After many tests came a misdiagnosis of Motor Neurone Disease. “This was devastating, as my mother had died of MND,” said Carol. “It wasn’t until more tests were carried out that I was diagnosed with IBM.

I know it is a strange thing to say, but it came as a relief.” Myositis was still incurable, and progressive with increasing muscle deterioration and weakness. “I have had a lot of falls and a few breaks,” said Carol. “I am no longer able to drive, which is quite restrictive, but my husband Russell is my carer, and he has been wonderful. “We have fun together. As things deteriorate, we have to learn new ways to find solutions, but it is important to work around the condition and stay positive.”

Carol finds comfort from the local branch of the Myositis support group run by Will Barger. “We catch up every three months. There is currently eight of us and our carers,” said Carol. “It is good to mix with people with the same problems. We talk, joke, and feel a little sorry for ourselves, but mostly we stay happy and positive.”

The Myositis group of conditions can affect different people differently. Deterioration can be at different rates and even with differing body parts being affected. Research underway is looking to make a positive impact for patients, however locating funding is always a challenge.

With sustainable funding, the Australian researchers have the potential to be world leaders in Myositis research, to find a cure or at least some form of treatment to slow the progression and symptoms.

To make a donation or for further information, visit www.myositis.org.au

First published 4th June 2025, Mornington Peninsula News