An estimated 16,000 Canadians live with scleroderma, an incurable autoimmune disorder which causes the body to produce too much collagen, resulting in a hardening of the skin and tissue. There is no cure for the scleroderma, but some patients in Canada are now seeking a costly and experimental stem cell therapy in the U.S.

A little over a year ago, Mike Berry of Kingston, Ont., started having trouble breathing. It was the first sign of scleroderma.

Berry, 42, suffers from the systemic version of scleroderma, which attacks his internal organs. His lungs have been scarred by the disorder, with his lung capacity dropping to 41 per cent in just nine months. His disease may ultimately be fatal.

He described to CTV News how scleroderma has impacted his day-to-day life.

"I'm unable to work any longer; it affects me and everything now," he said. "It's hard to walk fast; I can't walk and talk."

Drugs to treat his scleroderma haven't worked, so now Berry is trying to fundraise more than $150,000 for an experimental U.S. stem cell treatment called Autologous Hematopoietic Stem Cell Transplantation (HSCT), in the hopes that it will save his life.

"It would give me as second chance, I guess I just have a lot to fight for," he said.

Pioneered by Dr. Richard Burt at Northwestern Memorial Hospital in Chicago, patients receiving HSCT are administered stem cells intravenously.

During the treatment, the patient's stem cells are harvested, and then the patient's over-active immune system is destroyed with powerful chemotherapy drugs. Doctors then re-program the patient's immune system with the harvested stem cells, in the hopes that the cells will "reset" the patient's immune system and stop scleroderma.

Several patients claim the experimental therapy has stopped the progression of their disease. In a small study published in the Lancet in 2011, researchers found that the treatment improved skin and pulmonary function in patients for up to two years.

However, the treatment is considered experimental in Canada and is not available here. As well, Ontario's provincial health insurance plan does not cover the cost of getting the treatment in the U.S.

Erin Zubick also suffers from scleroderma. None of the standard treatments worked for her, so last year the mother of four became the first Canadian to get the stem cell therapy in the U.S., fundraising thousands of dollars to pay for it.

She told CTV News that she noticed the benefits of the treatment almost immediately.

"Actually, when I was in the hospital even, my skin started to soften," she said.

Now, a year after her treatment, she believes her disease is in remission. She said the benefits have been remarkable.

"I'm able to live a very normal life; I'm able to keep up with the kids," she said. "I'm able to go to school; and I'm off a lot of medications."

But many Canadian doctors believe that more research on HSCT is needed before it can be considered standard care.

A European study published last June showed that the treatment was associated with an increased risk of mortality in the first year after treatment. But after that first year, the mortality risk declined. The study concluded that HSCT "conferred a significant long-term event-free survival benefit."

Dr. Janet Pope, chief of rheumatology at St. Joseph's Health Care Centre in London, Ont., said that patients seeking the treatment should know about the risks involved, including a risk of death and infection.

"It is basically a dangerous procedure where one in 10 can die in the first year, and only very few people with schleroderma are eligible for the treatment," she said. "It's something that's really not appropriate at this point in time.

"I think we'll know more over time, but it's not ready for primetime for all of our patients in Canada. It'll never be ready for primetime for most of our patients in Canada with scleroderma."

With a report from CTV News Medical Correspondent Avis Favaro and Senior Producer Elizabeth St. Philip