For over 14,300 Canadians living with idiopathic pulmonary fibrosis (IPF), the pandemic is more than an inconvenience. Patients with the incurable lung disease, have endured months of isolation, cancelled treatments, and the frightening prospect of serious complications from a COVID-19 infection.
Melissa Sulpher of Kitchener-Waterloo, ON wants her four children to return to school this Fall but the 39-year-old, who was diagnosed in 2008, worries about the virus coming into her home as a result. “Of course I worry about getting sick, but I’m also worried that many PF patients are not able to access physiotherapy, clinics and support groups because of the pandemic,” she explains. “There are already so few resources to treat this disease, we can’t afford to stay home, but the consequences of an exposure are pretty dire.”
Survival rates lower than some cancers
Pulmonary fibrosis kills more than 2,500 Canadians each year, but remains a little-known disease, despite having survival rates lower than many cancers. This chronic and debilitating condition causes irreversible scarring (fibrosis) of the lungs and reduces oxygen flow to the body. As the disease progresses, the scarring typically worsens, making it more challenging to breath. For some patients, medication and physiotherapy can slow the progress of the disease, but the only long-term treatment is a lung transplant.
“We have a great community of support groups for patients and caregivers, plus researchers who are dedicated to finding better treatments and a cure,” says Kirk Morrison, President of the Canadian Pulmonary Fibrosis Foundation. “By building more awareness and investing in more resources, we can get PF patients and their families through this tough time and keep our focus on fast diagnosis and good quality of life.”
For Rayyan Aldosary, returning to a classroom this Fall is not an option. The 11-year-old from Calgary has been battling PF for most of his life and currently relies on full-time oxygen to breathe. In a recent video, he shares other inaccessible childhood activities, such as vacations and sleepovers with friends.
Hope Breathes Here
This week marks the beginning of Global Pulmonary Fibrosis Month, and the launch of CPFF’s Hope Breathes Here initiative. “We’ve created a free CPFF Event Portal so that all Canadians can connect, learn and participate in our activities”, Morrison says. “Our annual bubble-blowing event, fundraising walks and educational forums will be virtual this year. We know Canadians will step up to help us support PF patients and caregivers and the important research that will save thousands of lives.”
Cities across the country, including Calgary, Edmonton, Hamilton, Mississauga and St. John’s will light local landmarks in blue and red to mark Pulmonary Fibrosis Month. Click here for more information.
SOURCE Canadian Pulmonary Fibrosis Foundation