“When I look at the scleroderma community, I have never been around so many positive people who are sick,” Rosanne Queen, president of the Scleroderma Association of B.C., told the North Shore News in 2018.
Flash forward a few years and one pandemic later – the spirits are still high among British Columbians who live with the disease even while the association has had to adjust to the realities of COVID-19.
There have been challenges.
Scleroderma is a rare autoimmune disease in which a person’s immune system turns against itself by producing antibodies that attack its own tissues. Its most commonly described as a hardening of one’s connective tissues.
“The skin can become like concrete,” Queen, a North Vancouver resident who’s lived with the disease for almost 30 years, told the News a few years ago. “It hardens the arteries, it hardens the blood vessels, and it hardens around the organs. They believe we build up too much collagen and they don’t know how or why.”
It’s estimated that more than 20,000 Canadians and at least 2,000 British Columbians live with scleroderma.
With patients immunocompromised, living with scleroderma during the pandemic has been particularly challenging, especially for those who live alone, according to Queen.
“The biggest thing is loneliness. Because we are so susceptible we have been told by the experts that if we get COVID the chances are we will end up in the hospital – most of us are not going anywhere. Until vaccination, everybody that I talked to, they weren’t going anywhere,” she said.
Next month, though, Queen is hoping that supporters will get moving to help cure scleroderma. The association’s annual walk/ride in support of scleroderma research is taking place virtually over the month of June.
People living with the disease and their friends and families are encouraged to a join a virtual team, create their own team, or donate individually by participating in engaging outdoor activities over the month of June with the goal to raise $40,000.
Monies raised will go towards the SABC Research Project at St. Paul’s Hospital, which to date has received more than $400,000 in funding from the Scleroderma Association of B.C. through its annual campaigns.
The goal of the research project is to identify biomarkers specific to people who have pulmonary fibrosis caused by scleroderma.
“Basically they’re trying to figure out what is causing lung issues and fibrosis in scleroderma patients,” said Queen. “What is the genetics or the RNA that’s causing us to get sick?”
Visit the Scleroderma Association of B.C. website for more information about the disease, or to donate to this year’s Scleroderma Awareness Month campaign.
“Because we are a rare disease, there’s no government funding. The money that we raise is patient driven,” noted Queen.