“Cystic fibrosis is with me every day”

By Gordon Lambie
“Cystic fibrosis is with me every day”

Like many of the other walks and runs for a cause that would usually be taking place this time of year, the 16th annual Walk to Make Cystic Fibrosis History has been forced to move its steps online this year. For 2020, The fundraising event has been transformed into a virtual challenge that aims to maintain a mission of spreading awareness about Cystic Fibrosis while also helping people avoid gathering in large crowds.
Whereas in the past the walk would have called on supporters to come out to raise money and awareness on a given day, this year’s event gives interested participants the freedom to choose their activity and leaves the timeline open, provided that it can be completed by the end of Cystic Fibrosis Awareness Month this Sunday.
The most common fatal genetic disease affecting Canadian children and young adults, Cystic Fibrosis is a multi-system progressive disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus leads to progressive loss of respiratory function. Mucus also builds up in the digestive tract, making it difficult to digest and absorb nutrients from food.
Although improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung failure. There is no cure.
Joanie Lévesque, 27, is the Sherbrooke ambassador for this year’s event.
“Cystic fibrosis is with me every day,” she said, explaining that although some days are better than others because of factors like heat and air quality, she has a morning regime of nearly an hour and a half of treatment every day as soon as she gets out of bed.
“There is no exceptional treatment,” Lévesque noted, sharing that although she is on a good stretch at the moment, she is accustomed to a hospitalization about once every four months or so.
Lévesque said that her case is particular in that she was diagnosed at age 14.
“For the first fourteen years of my life I always had health problems but we could never be sure of why,” the spokesperson said, noting that the discovery of the real cause made a big difference to her life.
There are currently 4,370 Canadians living with Cystic Fibrosis, and Lévesque said that from her point of view the most important aspect of an event like this walk, online or not, is to help others get to know what those people are experiencing.
“When I go outside, I will often need to cough, and in this pandemic time people are often afraid,” she said. “They don’t know about cystic fibrosis and what it means.”
If, even for a short time, Cystic Fibrosis can grab some of the spotlight from COVID-19, Lévesque said she feels like it will be a positive. More awareness, she argued, will lead to more support, which could lead to solutions
“The COVID-19 pandemic has been a game-changer for the charitable sector in Canada; we are expecting a decline in revenue of 40-60% this year,” said Olivier Jérôme, Regional executive director for Cystic Fibrosis Canada in Quebec. “The pandemic will pass, but help from our community is needed now more than ever.”
This year, Cystic Fibrosis Canada will see significant declines in Walk revenue due to the COVID-19 pandemic. To secure its future, Cystic Fibrosis Canada is relying on the support of the community, volunteers, donors and supporters now more than ever to help achieve its vision of a world without cystic fibrosis.
For the past 15 years, the Walk to Make Cystic Fibrosis History has taken place in over 70 locations across Canada where thousands of people walk for a cure or control for cystic fibrosis (CF). Since its inception in 2005, the Walk to Make Cystic Fibrosis History has raised over $36 million to support research, advocacy, and quality individualized care.
Canadians interested in joining the virtual challenge can still register at: cysticfibrosis.ca/walk

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