AWARENESS MONTH: Mark Bousen makes progress in his fight against the rare disease, Myositis.
AWARENESS MONTH: Mark Bousen makes progress in his fight against the rare disease, Myositis. Yvonne Gardiner

Tweed local battles against mystery illness

TWEED Shire resident Mark Bousen noticed a few years ago that he had extreme weakness in his arms and legs.

Sometimes he couldn't lift a three-litre bottle of milk.

Mark was worried by these symptoms, being teetotal, a non-smoker and regular walker.

"I'd been treated for two years and I was told it was in my head,” he said.

Three years ago, he found out that he was suffering from a rare disease - myositis.

"When I got this, I was lucky to be able to walk 100 metres,” the 70-year-old said.

"The biggest issue I had was coming to grips with it.

"I put on 25kgs and there was obviously an impact on my wife.

"I realised 18 months ago that I was responsible for getting myself well.

"Losing weight was a huge thing, not only physically but emotionally.

"I've lost those 25kgs and now weigh 103kgs.

"I've got to lose more. I need to get down to 90kgs.”

It took a while to get the distressing symptoms under control with medication.

"The biggest effect was on my weakness - I can now lift 12 to 15 kilos,” Mark said.

"One of the other things you lose is your balance.

"It only happens when you stand up; you just have to take your time.”

It's Myositis Month in May. This is a complaint which usually afflicts people aged over 50.

Myositis is one of 80 auto-immune diseases affecting about 10% of the Australia/New Zealand population.

Myositis Australian Association spokeswoman Anita Chalmers said more awareness would bring earlier and more-accurate diagnosis and appropriate exercise advice.

"This month-long observance recognises the need for more research and understanding of myositis, a group of rare, incurable muscle diseases, in the hope of faster diagnoses, better treatments, and ultimately a cure,” she said.

Mark joined the MAA recently and is looking forward to his first "social gathering” with the group.

"It's sharing with other people and hearing how they cope physically and emotionally,” he said.

Despite the illness, he helps produce newspapers he owns in the Torres Strait and Far North Queensland from his home.

"We moved to Tweed Heads about four years ago because we love the area - the natural beauty and the lifestyle,” he said.

For further information about myositis, visit www.myositis.org.au.


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