Raising awareness about ‘disastrous’ lung disease

It’s a deadly disease that has no cure, and a diagnosis can be devastating.

Calgarians gathered at City Hall on Tuesday to learn more about Idiopathic Pulmonary Fibrosis, or IPF, a rare lung disease that affects an estimated 4,700 Albertans, including 1,200 Calgarians.

“It’s a disastrous diagnosis,” said Robert Davidson, the president of the Canadian Pulmonary Fibrosis Foundation. “There are only two options: death or a lung transplant.”

Davidson established the foundation after being diagnosed with IPF and receiving a lung transplant in 2010.

“When people are given a diagnosis of IPF, (it’s) scary. It’s like being told you have cancer,” said Charlene Fell, clinical associate professor of medicine at the University of Calgary.

“The difference between IPF and cancer is that everyone knows about cancer, but nobody knows about IPF. It’s hard to have your friends and family understand what you’re going through when nobody really knows about the disease.”

Alongside the Pulmonary Fibrosis Society of Calgary, Davidson’s CPFF is hoping to educate more Canadians about IPF during September, which is Pulmonary Fibrosis awareness month.

Pulmonary Fibrosis describes 200 different kinds of scarring diseases of the lung, and IPF is one of them. “It’s the one that is the terrifying diagnosis,” said Fell. “It’s the one that’s more aggressive. You don’t have a cure. We have some treatment options but we don’t have a cure.”

Doctors don’t yet know what causes the fatal lung disease with a median survival of three to five years from diagnosis.

Alongside Mayor Naheed Nenshi, Davidson honoured Fell and registered nurse Kirk Mathison on Tuesday for making a difference in the lives of IPF patients and their families.