A team of researchers is hoping to meet with people living in the region who have Crohn’s disease and/or ulcerative colitis.
Sandra Zelinsky and Courtney Heisler, an epidemiologist and research associate with the Nova Scotia Collaborative IBD program, will be hosting a focus group discussion on Wednesday, Dec. 12 in Williams Lake at the Central Cariboo Arts Centre.
“We have been travelling across Canada talking to people who live with Crohn’s disease and or ulcerative colitis and their loved ones about their experience of accessing care for inflammatory bowel disease (IBD) in their area,” Zelinsky said from her home in 100 Mile House.
The two researchers began their tour in September.
“Williams Lake will be our last stop,” said Zelinsky said.
“We are going to be in the Lower Mainland before we host the meeting in Williams Lake.”
They have been to Nova Scotia, New Brunswick, Quebec, Ontario, Manitoba, Saskatchewan and Alberta.
Heisler and Zelinsky are working with Dr. Jennifer Jones, a gastroenterologist from Dalhousie University in Halifax, NS.
Zelinsky knows first hand what it is like to live with Crohn’s.
She was diagnosed almost 26 years ago at the age of 19.
She said she has had her own struggles and it has had a huge impact on her life.
“Mine has been active and severe. It’s been pretty good over the last while, but I have had several bowel surgeries and been on and off many different medications. It’s typical for people to go on and off medications that don’t work while in the meantime their disease is progressing.”
The research project is funded by Canadian Institute for Health Research through the Strategy for Patient Initiated Research initiative.
“Behind it is the concept that we are tapped into what matters most to the end-users — the patients and their families — so that hopefully the research we do is more relative and meaningful to the people that are most affected,” Zelinsky said.
“We are going province to province to try and understand what is working and what is not working as well as just hearing about people’s experiences in general.”
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They are also eager to hear about the experiences of people in rural communities versus those of people living in urban centres.
“It is important to hear the rural voice,” she added.
“We are hearing all these stories as we travel about the struggles and challenges that people have living with these diseases.”
Their study is also supported by Crohn’s Colitis Canada.
Zelinsky completed a course at the University of Calgary called Patient and Community Engagement Research and works with various research teams on IBD.
“My work is around involving patients in research, not as subjects, but as partners throughout the research process.”
Currently 270,000 Canadians live with IBDs and the direct annual cost of caring for people with IBDs is estimated at $1.82 billion.
“They estimate by 2030 the number is expected to rise to 400,000, approximately one per cent of the population,” Zelinsky said, noting as time goes on more and more children are being diagnosed with IBDs.
Wednesday’s session will go from 5 to 9 p.m. There will be food and drinks provided.
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The Central Cariboo Arts Centre is located at 90 Fourth Ave. North.
For more information call or text Zelinsky at 250-706-8654.
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