Pulmonary fibrosis: A ‘hard journey to be on’

Amid the smokiest summer on record, many Manitobans are suffering the discomfort of breathing through hazy air. For Canadians living with pulmonary fibrosis, this struggle is what they experience every day.

Pulmonary fibrosis attacks the lungs, causing irreversible scarring. The leader of a national charity dedicated to supporting people impacted by the disease said many people who live with pulmonary fibrosis can’t leave their homes when it’s smokey outside.

“It’s hard enough to breathe (with an) oxygen (tank), but it’s even harder when you’re exposed to the forest fires and those conditions of (smoky) air quality,” said Sharon Lee, executive director of Toronto-based Canadian Pulmonary Fibrosis Foundation.

Lee was in Winnipeg on Saturday for the second annual Walk for Pulmonary Fibrosis at Assiniboine Park. The event aimed to bring together families affected by the disease so that they feel less alone.

It also aimed to shine a light on a disease made worse by poor air quality and raise funds for research, resources and advocacy efforts.

About 30,000 Canadians are diagnosed with pulmonary fibrosis each year, according to the foundation, and the disease claims the lives of around 3,000 people annually. Pulmonary fibrosis impacts people of all ages and has no cure.

Causes of pulmonary fibrosis include occupational exposures to asbestos and inorganic dusts, organic compounds like mold and bacteria, and some medications. Autoimmune diseases like scleroderma and rheumatoid arthritis, and chemo and radiation therapy, can also cause the disease.

Smoking is not a cause, but it is a known risk factor. Often, there is no identifiable cause.

“It’s a very hard journey to be on,” Lee said, adding that one of the reasons the foundation wants to educate people about the disease is so that more people can receive an early diagnosis.

Medication can’t reverse pulmonary fibrosis symptoms, but it can slow symptoms down.

“Most of the time people go through several years of thinking maybe it’s asthma, maybe it’s COPD (chronic obstructive pulmonary disease) or something else, and it’s not until it’s almost too late that they discover that there’s a scarring in their lungs,” Lee said.

Terry Greenwood was diagnosed with the disease three years ago after his then-partner encouraged him to ask his doctor about a persistent cough. Greenwood hadn’t even noticed the cough.

“It wasn’t a big deal but as time goes on you realize it is progressive and it gets to be more of a big deal,” he said.

Now 78, the retired aircraft maintenance manager is still able to participate in the activities he enjoys, including playing golf and pickleball and working out daily. He does experience shortness of breath and becomes tired if he overexerts himself, though.

“I’m very fortunate, but I see a lot of people around here that are in a lot worse condition than I am,” he said. “It’s a progressive disease that eventually (will) take you down.”

Greenwood attended Saturday’s walk with his daughter and son-in-law, Kelly and Michael Thibodeau.

“I need to bring more awareness to people that this happens,” Greenwood said of his decision to participate in the event. “It’s an insidious disease. If you’ve got a cough, you’ve got to get it checked out.”

Debbie Homik, a retired respiratory therapist, developed a passion for helping people with pulmonary fibrosis 20 years ago while running clinical research trials on medications for lung disease with her husband, a respirologist.

In 2017, Homik met Amy Webb, whose father died from pulmonary fibrosis. That November, the duo started a support group for people living with the disease and their caregivers. The group has been meeting monthly ever since.

Around 45 to 65 people show up to the meetings, Homik said. The meetings allow participants to learn about the disease and share their experiences.

“It creates a sense of family,” Homik said. “It gives them support, they get knowledge from each other (and) they don’t feel so alone.”

“Education is power,” she added. “If you understand your disease (and) understand what you can do to give yourself a better quality of life, it obviously enhances your lifestyle.”

Around 240 people registered for the walk at Assiniboine Park, which raised more than $54,000 for the Canadian Pulmonary Fibrosis Foundation.

The foundation is organizing similar events in seven Canadian cities throughout September and October.

aaron.epp@freepress.mb.ca