Smithers Scleroderma Walk for hard-to-diagnose illness

Smithers is one of two sites in B.C. with a Scleroderma Walk, planned for June 4.

Pati Struthers

Pati Struthers

Imagine a condition that you discover you have that gradually takes away most of the activities that you have enjoyed throughout your life. Hard to diagnose. No cure. Not much that can be done by any of the experts.

It affects every single part of your life. It looks like something simpler at first. It might look like arthritis, for example, but over time it just gets worse. The skin swells and hardens and there is a thickening in the joints.

Pati Struthers says that when she first started to notice she was having some of the symptoms, it was in her hands and joints, but it wasn’t until she started to have difficulty with the hikes she enjoyed so much that it was diagnosed as scleroderma.

Literally meaning “hard skin,” it had gone into her lungs and internal organs. At this point she can no longer completely close her hands due to the swelling and calcium deposits.

According to Scleroderma Canada, it is not considered hereditary or contagious and there is no cure.

For the last 15 years, it has affected her life in every single way. Her activity level has had to go down.

“I had to learn to take it easy and accept things the way they are. There’s always something worse. That’s the way you have to look at,” she said.

There are days when she has trouble going up the stairs and air conditions such as smoke alerts affect her a great deal. In February, she had an attack of pulmonary hypertension and had to be medevaced to Vancouver.

“I have grandchildren and there are a lot of things that we used to do that we can’t do any more, such as enjoy the pool and the hot tub,” she said.

While changes in lifestyle and medication can help to a certain extent, it slowly gets worse and worse as the veins, arteries and internal organs thicken like the skin.

“I can’t bike or I have to limit it to flat ground. You look good but you should see the insides,” she said.

She can still volunteer at the art gallery and enjoys gardening.

In Canada, about one in 2,500 people are afflicted with scleroderma. In Smithers, there are seven she knows of and all but one are women.

Sunday, June 4, Smithers will be the site of it’s first Walk, Run or Ride for Scleroderma, one of 14 planned events across the country.

Smithers is one of two sites in British Columbia.

“This is our first year and I can’t believe the generosity of people and the businesses. We’re up to $2,000 raised so far. We were aiming for $1,500,” said Struthers.

Genetic scientist Kevin J. Keen, PhD, P.Stat, of Genome Research Update, at UNBC will be attending the walk and talking at the opening of the event, along with local Dr. Fred Strauss who has studied the condition.

Nationally, last year’s Walk, Run or Ride for Scleroderma raised over $350,000. This year the goal is $500,000.

Registration for the walk will be at noon, June 4, with the actual walk scheduled to begin at 1 p.m.

The event will start at the Central Park Building, located at the corner of Highway 16 and Main Street.

For more information, contact Pati Struthers at retire2@citywest.ca.