Abbie Clarke was only a year old when her grandfather died of Pulmonary Fibrosis (PF), a lung disease that scars lung tissue and, over time, leaves patients without the ability to breathe properly. Since then, PF has killed a dozen of her relatives and claims approximately 3,000 Canadians a year, according to the Canadian Pulmonary Fibrosis Foundation (CPFF).
As a grade three student at Ralph McCall in Airdrie, Clarke and her classmates were challenged by their teacher to think of a way that they could better the community. Already aware of the toll PF was taking on her family, Clarke decided to organize a run to raise awareness for Pulmonary Fibrosis. Some donations were fielded and at the end of the day Clarke’s idea had raised just over $100, money that would be donated to the CPFF.
It was the first run of its kind, specifically addressing the effects of PF. Since then, the annual event organized by Clarke and her family has raised over $200,000. This year’s run in September 9 alone netted $15,940.
“I just needed a way to fight back,” said Clarke, now a high school student in Calgary. The goal of the walks is to raise money that will go towards extending methods of care for patients of PF. All the money earned is donated to the CPFF, who have used the funds to educate clinical researchers and to provide spaces for support groups.
Before the COVID-19 pandemic, the CPFF used some of the money raised by Clarke and her family to buy a comprehensive Zoom package so patients with PF from across the country could connect with one another and learn from the different experiences and provide support.
Symptoms appear first as shortness of breath and a cough that comes and goes. But, as time allows for the disease to develop, harsher effects take place. Without supplemental oxygen, a patient's lungs aren’t able to supply the body with a sufficient amount of oxygen, leaving them in a constant state of breathlessness and exertion.
Due to the mysterious nature of the disease, and its common symptoms, patients are often mis-diagnosed with more common lung diseases like Asthma or Chronic Obstructive Pulmonary Disease.
“Family doctors often look for other things first,” said Dr. Charlene Fell, a clinical associate professor of medicine at the University of Calgary. “It just takes time to identify.”
PF diagnosis is primarily done through CT scans of the lungs, where doctors look for scarring. At any rate, doctors want to identify and intervene as soon as possible.The damage done to the lungs is irreversible and there is, as of now, no cure.
Medications for PF, such as antifibrotic medications, hope to slow down the development of the disease. Since the implementation of these drugs in 2015, the progression of lung fibrosis has been reduced by up to 50 per cent, according to the CPFF.
For her incredible work, Clarke was recognized with the Great Kids of Alberta Award. For Clarke, the grand scheme of her well laid plans don’t end in a miracle cure being developed. Her goal remains the same today as it was when she was in grade three. “[The] end goal is to create awareness.”
“It’s amazing,” Clarke said, “to see the community come together…to see my family [who’s] helped me since day one. It’s amazing.”
