Greg Yakiwchuk lives every day in constant pain.
“It feels like burns all over your body,” Yakiwchuk said.
“Some days are pretty good but it is good to what I consider good, I still live in pain 24/7.”
Yakiwchuk has been living with scleroderma, a group of rare diseases that cause the skin and connective tissues in a body to harden and tighten, for the last 20 years.
“I was diagnosed November 1996, I didn’t know what was causing the pain – they gave me five years (to live),” Yakiwchuk reflected.
While there is not a lot known about the origins and causes of the scleroderma, the disease often affects women more often than men and most commonly occurs between the ages of 30 and 50.
“There is no explanation to what causes it or nothing. Cancer gets millions of dollars of funding for research but with this the research is virtually nil,” Yakiwchuk said.
The word scleroderma comes from Greek, sclero meaning hard and derma meaning skin. The scleroderma website explained that hardening of the skin is one of the most visible manifestation of the disease.
“The disease has been called ‘progressive systemic sclerosis,’ but the use of that term has been discouraged since it has been found that scleroderma is not necessarily progressive. The disease varies from patient-to-patient,” the website states.
“I used to belong to a support group in Calgary with five other guys, but they are all gone now,” Yakiwchuk said.
“I know quite a few women who have it and they seem to lead good lives but it seems like when men get it, the disease snowballs.”
Yakiwchuk was a carpenter by trade, working for the Catholic school board before the disease took over his life two decades ago. Since then, Yakiwchuk has been on disability and living in Cochrane for the past seven years while trying to keep up his hobbies, such as gardening and carpentry.
“I just get up and put my pants on – you take life day-by-day,” Yakiwchuk said.
“I can’t really make plans anymore. I mean, I can, but each day is different and it depends on the day – you just deal with it. And I still make carpentry, it just takes longer now.”
Yakiwchuk said when he was first diagnosed with the disease he was on painkillers for the first two years but taking the pills made him “feel more sick” and he has been medication free for the last 18 years.
“I feel better off the pills,” Yakiwchuk said.
“They told me from the start (the disease) will attack your organs and now it is but for the most part I was pretty healthy through the whole thing.”
It is known scleroderma involves an overproduction of collagen – research indicates there is a susceptibility gene that raises the likelihood of getting the disease but the gene itself does not cause scleroderma.
“Back 20 years ago there was virtually nothing, now people are becoming more aware,” Yakiwchuk said.
Scleroderma can affect fingertips, lungs, kidneys, heart, teeth and the digestive system. The disease has already claimed one of Yakiwchuk’s fingers and is currently attacking some of his main organs.
“It is like your lungs are encased in a cement. My lungs can’t expand and they are fibrous – my heart has to work harder but my lungs aren’t working,” Yawikchuk explained.
“My blood circulation is none.”
While there is not yet a cure for the disease, Yakiwchuk has managed to keep a positive outlook on life while making a joke or two.
“Don’t give up. Get up, put your damn pants on and get going,” Yakiwchuk said with a laugh.
