JULY 8, 2022
Going further is in Erika Ann Castrucci’s blood. As a personal support worker, she spent overnights in a long-term care health facility and days providing palliative support for clients in their homes. She had her sights set on becoming a practical nurse and was training to do so when her health started to fail, forcing her to step back. It wasn’t the first time her health had dramatically changed her life and she found a way to keep going.
After a “fairly healthy” childhood – one filled with puffers and antibiotics for what was thought to be bronchitis – Erika was told she had cystic fibrosis at the age of 15. She had just moved with her family from Toronto to Niagara Falls, Ontario, and after visiting a walk-in clinic a number of times with respiratory issues, she was asked to produce a sputum culture for testing, which led to the diagnosis.
“Everything that I had experienced up to that point finally made sense to me,” says Erika. She says her list of physical issues – clubbed fingers, bloated belly, running nose, coughing up mucus, lack of sleep, salt crystals on her eyebrows and, no matter how much she ate, never feeling full – were there the entire time and all caused by cystic fibrosis.
The shock was deep. “At fifteen,” says Erika, “being told that you are going to have a shortened life expectancy, is an extremely heavy burden to bear.” With fortitude and positivity, however, she decided to make the most of the time she had. She moved steadfastly into medication and physiotherapy and credits the long hours of treatment (and study) for graduating from high school with honours.
She knew what she wanted most out of life: a family. And she wanted to use her healthier years to raise her children. In January after graduating high school, she became pregnant with her son Dustin (now 12). She worked a number of different jobs to support herself, which she says, combined with the burden of cystic fibrosis symptoms and treatments, was extremely hard work. When her son was old enough to enter school, she enrolled in Centennial College to earn her personal support worker certificate.
Erika’s life then became even more full, and more intense. She was enrolled in George Brown College for practical nursing, working nights at the long-term health facility, days as a palliative community care worker, taking daily CF treatment and parenting 24 hours a day. It was during this draining busy period that her health suffered.
“Cystic fibrosis caught up with me and my first ever hospitalization was inevitable,” says Erika. She went from missing work and school to having to leave school altogether. Her time and energy were completely taken up with attending weekly clinic visits, treatments, home IVs and parenting her youngster. Her physical symptoms, including failing lung function, worsened rapidly and, as she recounts, so did her mental health.
It was at this low point in 2019 when Erika started to hear about the cystic fibrosis drug Trikafta. It took a few years and, as she points out, the relentless advocacy work of Cystic Fibrosis Canada and thousands of Canadians across the country, but in December 2021 she was approved for Trikafta, a watershed moment for Erika, her husband Adam and sons Dustin and Ace.
After some initial reactions to the drug, Trikafta proved to be transformative for Erika. She says she still has CF and still spends hours a day in treatment but is grateful for the funding that makes the drug that “changed my life forever” available to her. But she worries about the children with cystic fibrosis in Canada who need it and don’t yet have funding, and those for whom it won’t work; she does not want them left behind. She wants them, too, to experience what she has. “It has given me my life back,” she says, “something I never thought possible. It has given me the opportunity, for the first time ever, to realistically dream of growing old with my husband. To dream possibly even of dancing in the future at both of my sons’ weddings.”
Learn about Cystic Fibrosis Canada’s advocacy efforts to secure funding for Trikafta for all Canadians with CF who can benefit from it.