Sunday, 28 February is International Rare Disease Day, a day to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives. The Advocate has spoken to three people with rare diseases, via Rare Voices Australia, and will be profiled over the coming days.
Damian Slater’s life changed forever when he was diagnosed with Inclusion Body Myositis (IBM) when he was just 35-years-old.
Myositis, also known as IBM, is a rare and incurable disease where the body’s immune system attacks healthy muscle tissue, particularly in the arms and legs.
Damian was one of the youngest people in Australia, under 50, ever to be diagnosed with the disease. It affects an estimated 1,250 Australians.
“The diagnosis was devastating for my wife and me. The hardest thing about living with my condition has been the limitations it puts on what I can do with my wife and son.
“It’s really tough not being able to do all those things you naturally want to do as a father, like kick a ball, go camping, playing at ground level or just walk along the beach together,” Damian said.
“I never thought in my wildest dreams that I would be permanently in an electric wheelchair unable to shower myself, get dressed, and be on extended leave from the job I loved for over 25 years.
“The broken bones and staples to head after falls with no warning have become something I fear and live with.”
Damian is amazed by his son who has grown-up with his father having physical limitations.
“He’s adapted to it and is always the first to open a door for me or spot a hazard. That kind of support from any child is pretty incredible but it’s heartbreaking too,” Damian said.
“My wife is my rock and she gives me the strength to carry on each day. Her love and positive outlook is my greatest motivation.”
Damian still hopes that one day there will be a drug that will make life easier for him.
Two trials are underway in Australia and offer glimmers of hope for people with IBM. One is for the use of rapamycin in a phase 3 trial, and another phase 1 trial of a new compound. Drug trials are taking place overseas for other forms of the disease.
Whilst these trials give some room for optimism, any results will take years.
“For those with IBM, which has no treatment, life can become incredibly small. It’s like motor neurone disease in its progression, but it’s not fatal and patients typically live a long life,” Christine Lowe, President of the Myositis Association Australia, said.
“We need support for our patients and their families along their journey.”
May is Myositis Awareness Month and you can support the Myositis Association of Australia via their Facebook Page.