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This article was published 21/7/2013 (1341 days ago), so information in it may no longer be current.
One day when Helgi Olafson was 19, he tried to roll over in bed and swore his bones were rubbing against each other.
That year, he would often wake up in "tear-jerking" pain, his body so stiff and sore it took a while before he could start his day.
Olafson loved to swim, surf and bike and couldn't recall suffering any serious sports injuries. So when a doctor diagnosed him with sciatica, he knew something was off.
His mother, Cindy -- also skeptical about her son's diagnosis -- took him to a rheumatologist, who came up with the answer.
Olafson had ankylosing spondylitis, an autoimmune condition related to rheumatoid arthritis. He tested positive for the HLA-B27 gene, which is present in 90 per cent of people who have the condition.
If the disease is not treated early, the spine can curve and fuse, breathing can be difficult, bones can easily break and the body can become permanently damaged.
At first, Olafson -- an active teenager -- didn't handle the news well and he slipped into depression.
"I felt so weird and out of touch and out of control with my life. I didn't know if I was going to die. I didn't know if I was going to be able to walk," says Olafson, now 30.
At nearly six-feet tall and a lean 175 pounds, it's tough to believe Olafson is the face of a chronic disease that has the capacity to cripple.
The Arthritis Society says as many as 300,000 Canadians have ankylosing spondylitis. It's a disease in which the body's immune system attacks the joints in the spine. That can lead to pain and stiffness in other areas of the body, particularly in the hips, shoulders and feet. In some cases, the eyes and even lungs can be affected.
The former Winnipegger and amateur triathlete -- who now lives in Hawaii -- is back in the city for the first time in 14 years. He's here as part of a North American tour to raise money and awareness for his disease.
On the road, he is giving motivational talks, training, participating in races and trying to garner sponsors to support his journey.
His new, self-appointed job is more than full time, he says. He trains 30 hours a week and networks another 30 hours.
He's sort of a one-man show. Olafson quit his job as a Hawaiian resort chef -- he also helped choose contestants for Season 3 of Gordon Ramsay's MasterChef -- to promote the idea exercise and healthy living are just as important as prescription medication.
He's passionate about his new position.
"I want to show people it's mind over matter and exercise is medicine. If you want to be healthy, then you're the only one who's going to do it," says Olafson, who now only takes one medication to treat his ankylosing spondylitis.
As far as he knows, his condition hasn't caused any long-term damage -- and neither has the immune-suppressing drug he injects to keep his symptoms in check. (He admits he doesn't go to his doctors regularly because he does not have medical insurance in the United States and can't always afford to pay the approximately US$1,000 fee for each appointment).
He believes patients shouldn't only rely on conventional medicine to take care of their illness; they need to take control of their health through living well.
"(Health) can't depend on (just a drug). You've got to just do it."
Winnipeg is Olafson's first stop in Canada before he hits Calgary on July 28 to tackle the Ironman Triathlon that covers 113 kilometres of swimming, cycling and running.
Training for the event is gruelling. Olafson typically logs 480 kilometres of cycling, 90 km of running and about eight km of swimming every week.
He says he burns at least 5,000 calories daily and tries to replenish his body with enough calories and nutrients to keep his energy levels up. (He admits he doesn't shy away from foods such as burgers, but at the same time, he focuses on getting plenty of vegetables and lean protein.)
While some might criticize him for pursuing such extreme, high-impact sports, he says it's in his nature.
"I was always the one who would do the risky stuff, like jumping off the boathouse roof naked," says Olafson.
A major part of his personality, he says, was developed in Winnipeg, where he spent the first six years of his life.
It was near his River Heights childhood home on Cambridge Street that he first learned to ride a bike with a gang of friends from the neighbourhood.
He recalls family bike rides with his parents and brother through Assiniboine Park.
Olafson admits some days his disease renders him so fatigued he considers giving up for a fleeting moment during a run or bike ride.
During those times he thinks about an uncle with ankylosing spondylitis who didn't fare as well as Olafson. He says his uncle's spine is completely fused.
Another source of inspiration? The memory of his father, Barry, who died five years ago from complications of Type 2 diabetes.
"He'd do anything for us, but he wouldn't take care of himself," says Olafson.
The athlete points to the tattooed illustrations on his upper arms. One arm features a bright red maple leaf. The other features a character from the video game Mortal Kombat. He says it's a reminder to keep on the right path, to stay healthy and not to let his ailment get the best of him.
"He's climbing up a steep staircase... to fight his own worst enemy, which is himself," Olafson says.
You can meet Olafson at a free event tonight at the Canadian Mennonite University, 500 Shaftesbury Blvd. He will speak from 5:30 p.m. to 7 p.m. in classroom B132.
To find out more about the Helgi Olafson Foundation, log on to http://helgiolafson.org/.
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