Month of June brings awareness to rare autoimmune disease

It’s known as the disease that turns you to stone; which is why scleroderma was given the slogan “hard word, harder disease”.

A little over five years ago Tracey Magee, President of Scleroderma Saskatchewan, was diagnosed with the rare rheumatic autoimmune disease. Magee explained her medical team does not understand her condition.

“When I received the diagnosis I was not aware of what the disease was,” Magee said. “Since my diagnosis I have a group of physicians, and I am in clinics and blood testing. It’s been five years and I still have to explain my condition and how it affects me.

“So, that tells you how rare it is if our own medical support don’t know a lot about the disease. I find it hard as a patient to continually advocate for yourself.”

Magee finds it difficult to have been given a diagnosis that does not have a specific treatment. She explained the only way to ease the symptoms is through a small list of medications, or for some, a stem cell or bone marrow transplant.

According to Rexall, scleroderma belongs to the same family as lupus and rheumatoid arthritis, and about 16,000 Canadians live with the disease.

“I didn’t meet someone with scleroderma for almost a year,” Magee said. “In May alone I was contacted by three patients. Two were newly diagnosed and I think one as a patient just reaching out for support.”

The exact cause of scleroderma is still a mystery and currently, there is no cure.

“For me the disease presented with swelling in my hands and feet, and a lot of pain and turning blue,” Magee said. “Fatigue was a big thing for me as well as digestion and some dental/mouth issues.

“The easiest explanation I have heard is if you compare how a scar tries to heal, scleroderma thinks that our entire bodies are a scar or a wound, so it over produces collagen to try and heal what’s not really there. So it can affect all the organs, the heart, lungs, kidneys, all of our skin, our mouths… I think if I just said everything from head to toe I wouldn’t be wrong.”

Around the province, many cities have proclaimed June as Scleroderma Awareness Month to shed light on the rare disease.

Established over 30 years ago, Scleroderma Saskatchewan is a non-profit that acts as a support group and welcomes anyone wishing to learn about the disease.

“We are a small group of board members who are volunteers,” Magee said. “Of the five of us, three are patients. We are hoping to bring in new volunteers or board members to keep the association going.”

Typically, the organization holds an outdoor walk to raise funds for scleroderma research, but this year it went virtual.

“Our major fundraiser is our Scleroderma Awareness Month in June,” Magee said. “All the funds we raise in Saskatchewan go towards research in Canada.

“Due to the pandemic, we have had to move our June awareness to a virtual event. We’re doing fundraising in Saskatchewan and our goal is $15,000. To get involved (people can) go to hardword.ca and can register or donate.”