‘It’s not easy living with scleroderma’: Raising awareness about a rare autoimmune disease

A Nova Scotia woman knows first-hand how tough it is to live with scleroderma.

It’s a condition referred to as the “hard word disease.”

While many people may have never heard of scleroderma, it impacts thousands of people. About one in 2,500 Canadians live with some form of the disease, including Michelle Richard from Nova Scotia.

“What it was like at the beginning was a whole lot different than what it’s like today. So, in the beginning, I was quite ill with the disease, and so I think there was this almost a survival mode coming into that,” said Richard.

“I ended up on dialysis. There were a lot of issues, but slowly I started to recover from that and then adjusted to a new normal as a lot of us in our community say.”

She was diagnosed 25 years ago, and at the time, she didn’t think she would still be here today.

“You can have five to 10 years depending on the severity, and because I was quite severe, it was like, ‘OK, well, get things in order,’ but surprise! Here I am. I turned 60 and I’m grateful to have been able to reach that milestone,” she said.

Scleroderma, which literally means hard skin, is a rare autoimmune disease that causes the body to produce too much collagen.

“It’s very hard to describe,” said Scleroderma Atlantic president Jason Doucette.

It can affect people of all ages, races, and gender, but it is more common in women between the ages of 30 and 50.

“It can be an invisible and it can be a visible disease,” said Doucette.

“Visibly you can have your digits or your fingers really crumpled up for example. You can have a tightened mouth, tightened skin, or it can be invisible. So, it can affect your internal organs, your kidneys, your heart, your lungs, all of that.”

Doucette first got involved with Scleroderma Atlantic in 2013. His mother was initially diagnosed with Raynaud’s phenomenon which further progressed to scleroderma. She passed away in 2012.

“After she passed away, I decided to look up the scleroderma organization and came to their first walk here in 2013, and I just loved the organization. It was a small community, and I just wanted to get involved and give back,” he said.

June is Scleroderma Awareness Month, and Scleroderma Atlantic has been hosting its Make a Move fundraisers in cities across the region.

“It’s not easy living with scleroderma, but June is a time for us to be able to come together, to connect and learn from each other,” said Doucette.

Richard is grateful to have such a supportive community – one that is always ready to welcome more people.

“The Nova Scotia community has really developed, and we’ve been able to spread out to P.E.I. and New Brunswick and Newfoundland,” she said.

“We want people to know that we’re here, and that you don’t have to be alone. We’re here. We’ll help you, and we’ll help you when you’re ready.”

Make a Move for Scleroderma takes place at DeWolf Park in Bedford, N.S., on Saturday. Organizers hope to raise $30,000. The money will go toward supporting the physical, mental and financial health of those living with the disease.

For more Nova Scotia news, visit our dedicated provincial page