Annual fundraiser for scleroderma goes virtual in era of COVID-19

North Van resident living with rare disease speaks about lung transplant

Despite a global health crisis which in serious cases is known to cause shortness of breath, one North Vancouver resident is breathing a little easier these days.

Cecille Soriano is coming up on the one-year anniversary of having received a double lung transplant.

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“Health-wise things are going really great,” Soriano, 29, tells the North Shore News. “I still have quite a few appointments and check-ins, but the year mark is quite a big milestone and once you hit the year mark you can start to get ready to go back to work and the restrictions are a little looser.”

Soriano received a lung transplant due to complications caused by the disease scleroderma, a rare autoimmune condition which affects roughly four out of every 10,000 people, according to the North Vancouver-based Scleroderma Association of B.C.

The disease affects people differently, but is generally recognized by a hardening of one’s connective tissue starting with the skin and blood vessels, and eventually can affect vital organs such as the lungs. 

Soriano first noticed symptoms of the disease emerge while on a backpacking trip through Europe when she was 19.

“I had noticed my skin … had patches that were dry, almost like snakeskin,” Soriano told the North Shore News last year.

After receiving a diagnosis of scleroderma, Soriano lived with the condition for years until it progressed to the point where it started to affect her lungs.

Soriano says she was lucky to not have to wait long for her transplant and has been amazed at how quickly she’s been able to get back to some of the things she loved doing prior to her lungs starting to fail.

“I find everyday there’s new things I’m able to do again,” she says. “It’s just basic things: I can take the dogs for a walk and not have to take any breaks. I can actually run again, which is something I haven’t been able to do in years.”

While she continues onwards in her own journey with the autoimmune condition, she’s also intent to keep supporting the organization that has helped her immensely with the physical and mental struggles she’s faced throughout the past decade.

The Scleroderma Association of B.C. aims to support those living with the disease as well as raise money for research.

“If there’s somebody else out there that is going to be helped by finding this cure and if they can live their life a little bit better and not have to go through this kind of surgery, then I’m going to do whatever I can,” says Soriano, who first connected with the organization years ago shortly after her own diagnosis.

Due to the ongoing COVID-19 pandemic, the organization’s annual Ride for Research – which in past years has involved a 30-kilometre bicycle ride up to UBC and has raised to date more than $165,000 for scleroderma research – has had to go virtual for the month of June.

From June 1-29, the virtual fundraiser encourages people living or affected by scleroderma – if they are able – to go for a walk, bike ride, run, hold a virtual family activity or do some relaxed stretching at home.

Participants are also encouraged to donate online as well as take photos of their activity which can then be shared with the organization or tagged on Facebook.

The goal is to raise approximately $30,000 for scleroderma research.

“We’re still encouraging people to do something active, whether that be going for a walk, or going for a ride, and of course following social distancing guidelines,” she says. “Throughout June we’re going to be sharing photos of everybody’s rides and walks.”

Since receiving her lung transplant, Soriano is no longer required to use an oxygen tank. Although people living with an autoimmune condition are compelled to be extra careful in the era of COVID-19, Soriano has adopted her usual upbeat attitude when it comes to living with a rare disease while a global health crisis continues in tandem.

“In one sense, I was lucky because I’ve basically been quarantining for a year already. I’m used to staying home,” she says. “I was lucky that the staying at home didn’t affect me as much.”

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