‘We call it a goulash disease’

This story was originally published in The Westshore newsletter, June 9, 2022.

Corinne King was newly wed, visiting Costa Rica with her husband when she noticed one finger turning white—like, corpse white. It started curling inwards involuntarily and stayed that way. Then a second finger turned white. She went to a clinic, they sent her to the emergency room, and eight hours later she had a diagnosis of something called scleroderma.

“Scleroderma… what on earth is that?” she wondered. From there more fingers turned white and curled, and then the skin on the tips of her fingers started to disappear. They're called digital ulcers, and they’re as painful as they sound.

King had to rely on her husband to wash her hair, tie her shoes, and dress her. It was debilitating.

Scleroderma is an autoimmune disease that causes a hardening of the skin, which can restrict blood flow. It affects fingers and toes, and sometimes the nose, ears, or elbows. A life-threatening version of it, called diffuse scleroderma, affects internal organs and can harden lungs, heart, and kidneys.

The exact cause is unknown, there is no cure, little effective treatment, and once the damage is done there’s no reversing it. Plus, there is a cluster of related medical issues, like rheumatoid arthritis, lupus, acute kidney disease, pulmonary hypertension, lung inflammation, and gastrointestinal problems.

“We call it a goulash disease, because there are so many underlying issues,” King said.

Finding out the extent of her diagnosis was extraordinarily hard when between her five specialists and family doctor she often heard, “I don’t know what to tell you.”

King was a professional figure skater, performing with Disney on Ice for years, and more recently working as a skating coach. But the scleroderma stopped her from working, so impaired was her ability to do basic functions and withstand the cold.

She developed difficulty swallowing, and then was diagnosed with osteoporosis in her foot. “I thought, oh great, let's just keep adding to the list.”

It was two years before King found other people who had the same mysterious disease, when a friend happened to see a poster for a scleroderma walk. “I was sitting here by myself feeling like there’s no one else, so to meet these other women has been a huge relief,” she said.

There are six women with scleroderma in Greater Victoria who meet monthly for lunch. King recalls a huge weight being lifted the very first time they met and she learned that she wasn’t alone.

“Oh my god, these people eat as slow as I do!” she was thrilled to notice—a common impact of scleroderma is difficulty swallowing. “Mostly we laugh, and that is huge.”

The group of women—scleroderma mostly affects women, between 30 and 50 years old—are gearing up for a fundraising walk this Sunday. It’s their fifth annual walk and will be the first in-person walk since the pandemic. The goal is to raise money for research to find a cure and better treatment—all proceeds go to the Scleroderma Association of BC—but also to raise awareness. King wants to make sure others who get the diagnosis know they aren’t alone.

The walk is this Sunday June 12, 9:45am at the picnic shelter in the lower field of Juan de Fuca Recreation Centre. Register or donate online ahead of time, or in person on Sunday. The walk is approximately 2km.