How one couple rallied to raise $50,000 for Pulmonary Fibrosis research
Submitted by St. Paul's Foundation
Much can be achieved with a little help from your friends. Just ask Barbara Deglau and Martin Wittman.
When Barbara and Martin met in 2010, both had been through a lot. Martin had recently lost his wife to breast cancer and was primary caregiver to his eldest son, who had been born with Cerebral Palsy. Barbara was also a widow and, since childhood, had suffered from some minor lung problems, culminating a few years ago with an official diagnosis of Pulmonary Fibrosis.
The causes of Pulmonary Fibrosis (PF) remain unknown; but not its effects. “What we do know,” says Barbara, 66, “is that PF affects your breathing, gets progressively worse, and is always fatal.”
In the fall of 2012, Barbara’s condition took a downturn and she was told that, without a lung transplant, she would likely not live beyond two more years, give or take. Barbara is now on the lung transplant waiting list; although there is no guarantee if or when Barbara will receive a transplant.
In the meantime, it was all the not knowing—what causes PF, why it can take years to diagnose, why people don’t seem to know about it despite its impact (in Canada, PF takes as many lives as breast cancer)—that motivated Barbara and Martin to take action.
The lung transplant waiting list became yet another motivator when the couple learned that the two dozen lung transplants performed each year in BC still leave another 60 to 70 people waiting.
But what really inspired Barbara and Martin was the quest to learn more about PF—and the inspiration they found in the groundbreaking work of St. Paul’s respirologist Dr. Chris Ryerson.
“I’m Dr. Ryerson’s most willing guinea pig,” says Barbara with a smile. And she has reason to smile. Barbara has already participated in four separate studies by Dr. Ryerson that have helped her significantly. Dr. Ryerson’s work also showed Barbara, having been reliant on an oxygen tank for the past year, the importance and benefits of managing oxygen levels.
Always an active and energetic person, even in the face of her PF, under Dr. Ryerson’s care Barbara was able to return to her beloved physical pursuits, including a recent 20-plus kilometre bike ride undertaken with portable oxygen concentrator strapped to the back of her bike.
What Barbara and Martin have also learned on this journey is that even major institutions like St. Paul’s still encounter challenges when it comes to finding adequate funding.
“St. Paul’s has one of the world’s leading centres of research in Pulmonary Fibrosis,” says Barbara, “but even at St. Paul’s, funding is sadly lacking. Martin and I are committed to helping them in their work.”
And that’s exactly what they did—and then some!
Learn more about how Barbara and Martin rallied their friends and family in support of Pulmonary Fibrosis.
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