Even after 4 decades, this N.L. woman's fight against scleroderma remains unyielding

As the morning sun spills into her St. John's apartment, Bev Blanchette gets ready to face another day grappling with a rare medical condition known as scleroderma.

"The word itself is hard enough to spell, but it's a hard disease to live with," said Blanchette.

Scleroderma, also known as 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, robbing people like Blanchette of their mobility.

With the condition, ordinarily simple tasks like eating and smiling become difficult to accomplish.

"You can't open your mouth. You can't really chew. This is it. I got one thumb that works," said Blanchette.

An advocate for her own health, Blanchette has seen almost 50 specialists over four decades.

"I feel like I can teach the doctors a thing or two now," said Blanchette.

Pictures captured at her 40th birthday, almost three decades ago, hang on her wall and remind her of a time when the disease hadn't yet etched its mark.

"See that?"said Blanchette. "My eyes were shining then. Now they're lifeless."

According to Blanchette, she bears one of the most severe cases of scleroderma in the province.

Blanchette said one of the hardest consequences of scleroderma is the loss of one's ability to freely express emotions.

"The worst part of it is it takes away your features," she said. "I can't smile any more. Most people think that you're mad or upset, but it's just that there's no giving in the skin to be able to smile."

In the midst of this, her relationships have also been tested and strained. Blanchette said the disease has had an impact on her personal connections, casting a long, challenging shadow over her interactions.

"Sometimes I think to myself, where would I be in my relationships if I didn't have scleroderma?" she said.

To be an advocate for her own health, Blanchette founded "Scleroderma on the Rock" in the late '90s, a now defunct support group that was initially comprised of 22 members.

She has also worked with Scleroderma Atlantic to raise a flag at St. John's city hall marking June as Scleroderma Month, and in recognition of the 209 diagnosed patients in Newfoundland and Labrador. Blanchette thinks there are likely many more undiagnosed.

"A lot of people just don't know because they are never diagnosed or they've never heard of it," she said.

Next year, St. John's will host a national conference on scleroderma. Blanchette's hope is that it will be a significant step toward illuminating the realities of the disease, furthering researchand inching closer to a cure

The condition leads Blanchette to spend many hours alone in her apartment. However, she finds solace in the company of her three cats while she's home.

"They're what keep me going," said Blanchette.

Blanchette said her fight continues, not just for herself, but for all shadowed by scleroderma.

"It's been 40 years and I am still here," said Blanchette.

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