Fueled by Hope

Shirley Lyster’s mission began in the wake of an unimaginable tragedy. In March 2017, her 20 year-old son Cam passed away, after being diagnosed with Ulcerative Colitis less than a year before. It was a shock that changed Shirley’s life.

Like most Canadians, Shirley and Cam weren’t aware of Crohn’s and Colitis, despite the fact that 1 in every 140 Canadians is diagnosed with Inflammatory Bowel Disease (IBD)—the highest rate in the world. “Cam and I knew nothing about Colitis. We had no idea what it was about. And if it doesn’t affect you, you don’t know,” says Shirley.

Today, Shirley is determined to share her awareness of the risks of IBD. Her efforts are fueled by hope; the hope that sharing her son’s story and educating others in her community, and beyond, can open up conversations around a “silent” disease.

IBD is considered a “silent” disease because people feel embarrassed or uncomfortable talking about bowel movements. Frequent bowel movements and extreme fatigue are prominent IBD symptoms. Shirley hopes that through education and awareness IBD will one day be taken seriously and openly talked about—but someone needs to start the conversation, she says. “It’s got to be brought to people’s attention. We had a little boy at school with muscular dystrophy and that’s not a common thing either. But through the work that him and his parents did, it educated our communities. And that’s what I think we need to do too…” she says.

Shirley has worked as an Educational Assistant in the Camrose area for over two decades. Last year, she gave a talk to local high school students about Crohn’s and Colitis. “I told them that they’re ambassadors now…They can support friends that may be diagnosed…or for them themselves, they’ll have a bit of a background in it. Perhaps if it shows up in them, having this information will get them diagnosed sooner,” she says.

Every opportunity Shirley gets to spread awareness, she takes it. “It’s funny because I’ve never been a public speaker. I’ve always tried to avoid it. But I don’t find myself nervous doing these things. I guess it’s because I feel strongly about it,” she says. She’s been working alongside the Edmonton chapter of Crohn’s and Colitis Canada to participate in speaking engagements, do interviews, and fundraise for their annual Gutsy Walk.

Shirley refers to the chain of events since taking up the cause as a “snowball effect.” It’s growing and changing before her eyes, and she’s embracing every new opportunity with open arms. “I feel that I’m accomplishing something. There’s got to be some good to come out of this,” she says.