Last winter, Lori discovered there is something much worse than being diagnosed with Crohn’s disease: seeing your child develop the same incurable, debilitating illness.
The Pictou County woman, whose last name is withheld to protect her daughter’s privacy, became very ill three years ago. Her struggle with Crohn’s was nothing compared to the pain of seeing her daughter fight the same battle.
“I was heartsick for her,” Lori says. “I was beyond heartsick. She’s 13 with a chronic illness and there’s no cure. As a parent, there’s nothing you can do. You can’t breath. You can’t think. We don’t know what’s going to happen to her.”
The increasing prevalence of Inflammatory Bowel Disease (IBD) among young people is strong motivation for raising money for research, says Lana MacEachern, Pictou County’s honourary chair for the Gutsy Walk, a national annual fundraiser for Crohn’s and Colitis Canada (CCC). This year’s walk takes place June 8 at Carmichael Park in New Glasgow.
In 2012, CCC released a report titled The Impact of Inflammatory Bowel Disease in Canada. The report estimates 233,000 Canadians live with IBD, which includes Crohn’s disease and ulcerative colitis. Each year, some 10,200 new cases are diagnosed. Most troubling is the increasing number of diagnoses in young people, particularly children under the age of ten.
The diseases affect the gastrointestinal tract, causing symptoms that include abdominal pain, frequent and urgent diarrhea, bloody stools, weight loss, fatigue, and nutrient deficiencies as well as non-gastrointestinal problems like joint pain, canker sores in the mouth, and skin and eye irritation. These are chronic illnesses with no known cure, and symptoms can flare up unpredictably after periods of relative good health.
MacEachern, who has ulcerative colitis, says along with the physical challenges of IBD comes the emotional impact; embarrassment and shame about symptoms can leave sufferers feeling isolated.
“Imagine being 10, 13, 16-years old and being afraid to go on a class trip or travel with your sports team because you might sudden abdominal pain or have an urgent need to use a washroom when there’s none available,” she says. “It’s hard enough dealing with these diseases as an adult, but for young people already struggling with self-esteem and peer-acceptance? No child should have to carry that burden.”
The awareness component of the Gutsy Walk is just as important as the funds raised, says MacEachern. She says unfortunately, there is a stigma attached to IBD because of the areas of the body affected. It’s difficult for people to talk about it because they don’t know how others will react.
“We had a young man in the community who considered being honorary chair for the Pictou County walk this year and my response was, that’s what we need, to show other young people that they’re not alone in this, that it’s nothing to be ashamed of. He changed his mind out of fear that if he publicly stated he has IBD, he wouldn’t be able to get a job.
That’s the kind of wall we need to tear down.”
The impact of IBD on young people weighs heavily on the mind of Joan Murray, a New Glasgow resident who was diagnosed with Crohn’s disease in 2007. She is currently on Remicade, a biologic medication which has improved her quality of life. It is not, however, a cure. Neither are any of the other forms of treatment currently available, all of which can have side effects and in some cases, carry risks for developing other health problems.
“I have great concern not for myself but for others who have this disease and they are a very young age,” said Murray, a member of the Pictou County CCC affiliate group who has participated in the Gutsy Walk for about four years. “It’s for them that we want to find the cure.”
Registration for the Pictou County 2014 Gutsy Walk will take place at 10:30 a.m. at Carmichael Park, with the walk beginning at 11 a.m. Participants can contact Mike Hollis at 925-2582 for pledge sheets or visit www.gutsywalk.ca to register to collect pledges online or donate online.