For others, the problems are internal as organs follow the same path, eventually losing their ability to function altogether while causing debilitating pain and a host of other life-altering symptoms.
And no matter how the disease affects you, it can only be treated to lessen the symptoms, as no cure exists and research continues on the root causes.
There’s no way around just how insidious scleroderma can be, the damage it can cause and the terrible effect it can have on day-to-day lives.
The month of June was Scleroderma Awareness Month across Canada and this past Wednesday also served as World Scleroderma Day, with buildings and monuments all over Saskatchewan and beyond lit up in blue in support of those battling the disease.
“It was a really busy month, we tried to get a lot of different municipalities and cities across the province involved this year and we had pretty good luck,” said Colin Magee with the Scleroderma Association of Saskatchewan. “We had several cities like Moose Jaw do proclamations and others did flag-raisings as well and others lit up their monuments and buildings in blue on World Scleroderma Day. It’s definitely appreciated and goes a long way to spreading awareness.”
Colin and wife Tracey Magee -- president of Scleroderma Sask -- have both spent many, many hours working on expanding awareness of scleroderma in the province, and for good reason. Tracey herself was diagnosed with systemic scleroderma in 2015, and found herself regularly having to explain the disease to those around her. Her voice and that of others fighting scleroderma have raised the profile of their battle in recent years.
“I feel like people are starting to remember from the year before and as we hold broader campaigns,” Colin said. “We try to be as active on social media as we can, and I think it captures people’s attention because it is a ‘hard word’, which is where our slogan comes in, ‘hard word, harder disease’, which is also a play on words because it hardens tissue.”
The education campaign even extends to doctors themselves, who are often unable to immediately diagnose the disease.
“Just knowing about it is half the battle,” Magee said. “A lot of general practitioners learn the basics of many different diseases and you can’t blame them for not being aware of the rare ones they might rarely see. So we find our patients go a long time being undiagnosed before testing will lead to a diagnosis.”
That’s where the month of awareness comes into play -- Scleroderma Sask held their annual Walk, Run or Ride for Scleroderma virtually throughout June, raising around $8,000. The hope had been there to hold live events throughout the province, but the ongoing pandemic made that too difficult for patients already at risk.
“One of the reasons scleroderma is attacking the person is because of a compromised immune system, and one of the common treatments is immunosuppressants,” Magee explained. “So they’re compromised, on what amounts to low-dose chemo, and then you have COVID wandering around out there… it’s a threat on top of it all.
“So as an organization, we’re happy to see virus numbers down and vaccinations up and hopefully our patients will soon be able to join in activities, too, and feel safe.”
Once that happens, the focus will once again turn to research, with Magee hoping a major breakthrough leads to auto-immune diseases of all types becoming a thing of the past.
“A lot of them function in similar ways, so maybe when there’s a breakthrough there will be cures for many auto-immune diseases on top of scleroderma,” he said.
For more information on Scleroderma Sask, be sure to visit their comprehensive website at www.sclerodermasaskatchewan.ca.
