My name is Damian and in 2008, I was diagnosed with Inclusion Body Myositis (IBM) at 35 years of age – just six months after I was married. I was one of the youngest people in Australia to be diagnosed with the disease.
The diagnosis was devastating for my wife and I, but with the support of my wonderful team of specialists, we remain positive about future upcoming drug trials and grants to find a cure.
IBM is a rare, incurable disease, where the body’s immune system attacks healthy muscle tissue, especially in the arms and legs. A clear cause of IBM is unknown. It develops weakness in the thigh muscles, wrists and fingers along with muscle wasting of the forearms. Balance and walking problems develop as a result and swallowing can also become very difficult.
At this stage, there is no effective treatment for IBM and patients like myself end up requiring assistive devices for daily living. I required a walking stick, then a walking frame and I am now confined to an electric wheelchair ( unable to weight bear).
The hardest thing about living with my condition, has been the limitations it puts on what I can do with my son and wife. 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.
My son is just amazing though, he’s grown up alongside me having these physical limitations and he’s just adapted to them 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 heart-breaking too.
I never thought in my wildest dreams at this age (forties), 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.
What had my life become? The anger, denial and acceptance of this disability, forced me to adapt to a new reality!
The admissions to hospitals and rehab, the broken bones and staples to the head after falls with no warning, has become something I fear and live with.
My wife’s loving, positive outlook is my greatest motivation. She is my rock and gives me strength to carry on each day.
My greatest hope and dream is that grants are approved for drug trials so I can participate and hopefully discover a cure for all of us living with this rare disease.
May is Myositis Awareness Month – see RVA Partner, the Myositis Association of Australia’s Facebook page for more.
