This woman hopes a national conference will shine a light on scleroderma in N.L.

Medical professionals, researchers and people living with a rare medical condition are in St. John's this week to share advancements in treatment and cut down on the isolation it can bring.

The 2024 National SclerodermaConference is happening until Saturday in downtown St. John's. Scleroderma, which literally translates to "hard skin," is an autoimmune condition that tricks the body's tissues into believing they are under constant attack or injury. The immune response is to then gradually thicken and tighten the skin and connective tissues.

Scleroderma has no known cure. It's still unknown what causes the condition, which affects about 1 in 2,500 Canadians.

Jillian Turner was diagnosed at 13, when she was living in Sandringham, on Newfoundland's Eastport Peninsula. She's been able to manage her symptoms for 28 years, but there are still daily challenges.

"It's the little things. I just tried to pour myself a cup of coffee and I have to support one hand with the other because I just don't have the muscle strength in one arm to do that. You know, the headaches can be quite intense at times. The muscle spasms that I get are very painful," Turner told CBCNews.

"It really does have an effect on your whole lifestyle."

Most people, including her physicians, didn't know about the condition when she was diagnosed, she said, which made her feel isolated and overwhelmed.

"It wasn't until Iwas in university and saw a very fine print at the end of a newspaper article saying that there was a group for scleroderma patients," she said.

"It was exciting. We finally found someone who knew what youwere going through. Because that's the thing as a lot of things with scleroderna, you might not be able to see. People say, 'Oh, you look fantastic,' but you just feel awful. So to finally find someone who kind of understands that was really important."

Turner said education onscleroderma has improved in Newfoundland and Labrador, but added there's still a long way to go.

Part of that includes treatment, which she said has been impacted by the strain on the province's health-care system.

"I can see a huge difference just in the last few years that when I could see my doctor within three months, it's now six months to a year. And testing, if we need tests for any new symptoms coming up, we're waiting, you know, two years to get anywhere," she said.

Jason Doucette, president of Scleroderma Atlantic, hopes having the conference in St. John's will raise awareness of the condition in the province and provide people with scleroderma and their loved ones the same connections Turner has found.

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