Anna Gravelle has spent the past three decades working with children with cystic fibrosis (CF). From starting out as a camp counsellor at a CF summer camp in Ontario, to becoming the longest-serving nurse clinician at BC Children’s CF clinic, Anna has witnessed some remarkable progress in CF care.
"When I first started, the median age of age of survival for someone diagnosed with cystic fibrosis was about 32 years. Today, that median age has almost doubled to about 54 years. By far, the most rewarding part of my job is being able to develop long-term relationships with these families and help my patients transition into adulthood.”
CF is Canada’s most common fatal genetic disease affecting young children and adults. The disease affects multiple organ systems but has its major impact on the lungs and the digestive system. It is estimated that one in every 3,600 children born in Canada has CF.
In B.C., the introduction of a provincial program for newborn screening in 2009 and advances in care have led to better patient outcomes and increased life expectancy.
“Evidence shows that frequent and regular multidisciplinary CF specialty care is needed to achieve optimal health outcomes,” says Dr. Mark Chilvers, BC Children’s CF clinic director. “This should be provided in a patient- and family-centered manner from the diagnosis at birth to the end of life. And it’s what we aim to do at our clinic.”
The team at BC Children’s CF clinic currently care for roughly 150 children from all over B.C. and the Yukon. Families typically visit the clinic or an outreach clinic once every three months, although some of these visits are now done virtually due to the pandemic.
Virtually, or in-person, these young patients see more than just doctors and nurses – they also receive care from social workers, dieticians, pharmacists, registered clinical counsellors and physiotherapists.
“We focus on both the physical and mental well-being of our patients because these families really rely on our team for support,” notes clinic physiotherapist, Melissa Richmond. “Our clinic is a leader in many ways, including being one of the first in Canada to implement a formal program to help our patients transition into adult care.”
While Melissa loves teaching families breathing exercises to help maintain clear airways and healthy lungs, she hopes one day her job won’t be needed.
“I hope our roles will shift to a different kind of education to support this chronic disease. The research in CF is very exciting right now and once that trickles down to children, I can’t wait to see what the future holds for them.”