Sarah Scully says that most of us know at least one person who has been affected by her condition, even if we don’t realize it.
“They might not have told you because people aren’t necessarily comfortable speaking about it,” she says. “But it’s definitely something that I’ve been trying to build awareness of.”
The local resident was diagnosed with ulcerative colitis at age 13. Since then, she has raised more than $80,000 for the Crohn’s and Colitis Foundation of Canada (CCFC).
Scully recently participated in the Heel ’n’ Wheel-a-Thon, the organization’s biggest annual fundraiser. Along with her brother Adam, she says she hopes to raise $20,000 toward the cause this year. So far, they have brought in more than $16,000 in donations, with only a few weeks left to reach their goal.
“It’s nice to know that we’re doing our best to try and help the foundation,” she says.
At age 20, Scully has been involved with the CCFC for seven years now. She says she got started with the organization after getting diagnosed, as a way to get informed.
“I was shocked to learn that both Crohn’s and colitis have no known cause and no known cure,” she says.
Scully says this is what truly motivated her to keep volunteering at CCFC and to fundraise in hopes of one day changing this.
Since the disease affects such a personal area of the body — the intestines — she says she feels there is often a stigma around talking about the diseases.
Together, Crohn’s and colitis are known as inflammatory bowel disease. Not everyone will experience the same symptoms, but both are characterized by chronic inflammation of the gut. Sufferers may have flare-ups followed by remissions.
When flare-ups occur, says Scully, this can affect a person’s ability to attend school or go to work.
“It’s a lot of time being in the bathroom and being sick and feeling uncomfortable,” she says.
Not only does Scully fundraise and spread awareness, but she spends time talking to the newly diagnosed, to offer support, and to other sufferers, to learn about their experiences and about how they cope.
“When you first get diagnosed, you feel pretty alone,” she says. “You don’t really want to talk to other people about what’s going on because it’s embarrassing.”
She likes to let others know that they’re not alone and that they can talk about what they’re going through.
“It’s nothing to be afraid of or ashamed of,” she says.
Scully counts herself lucky to have been largely symptom-free for the last few years.
Unfortunately, she has a new source of inspiration in her mission to find a cure. Her 18-year-old brother, Adam, was diagnosed with Crohn’s disease earlier in the year.
“Watching him suffer is far worse than me feeling it myself, I think,” she says.
Scully tries not to allow her condition to impact her own lifestyle. When she was experiencing symptoms, she did her best not to let it show.
“For me, I would let my home be the place where I let the disease really affect me,” she says.
Currently, Scully works as a promoter for a beer company and likes to golf in her spare time. When she attended Earl Haig Secondary School, she was extremely involved in athletics and joined the business club in her later years there.
In the past, she has served as honorary chair of the Heel ’n’ Wheel-a-Thon.
Scully has been happy to see the fundraiser continue to grow every year. She says she takes it as a sign that people are becoming more aware.
Also encouraging have been research results that are getting closer to determining the cause of these diseases.
“I’ll never stop fundraising for the CCFC until a cure is found,” she says.
Donations can continue to be made to the foundation through Sarah and Adam’s team at www.heelnwheelathon.ca.