As May comes to a close, I’m thinking about Cystic Fibrosis Awareness Month.
May is traditionally a time when the CF community comes together, on social media or in person, to support each other while raising awareness and funds. There are letter-writing campaigns and charity galas and trending hashtags, all culminating in the Walk To Make CF History, which in 2022 took place on May 29 in locations across Canada.
But for people living with CF, the disease doesn’t end on May 31. For them, every day is a battle with an insidious disease that threatens to ruin their lungs and other organ systems. CF is fatal and incurable.
There are approximately 4,300 Canadians currently living with CF.
My daughter is one of them.
For her, CF is a part of her everyday life, as it has been since she was diagnosed as a premature infant.
She undergoes hours of therapy every day.
She takes dozens of medications every day.
She arranges her life around her disease, every day.
Decades ago, her prognosis would have been grim. Many CF patients didn’t live past childhood. Now, the median lifespan is in the early 50s, which is a vast improvement but still falls far short of the expected 82+ years that the average healthy Canadian enjoys. As her mother, I was told to manage my expectations. Maintaining her health may be her full-time job, I was told. She may not be able to pursue higher education or support herself. A family of her own may be impossible.
But there is hope.
A new medication called Trikafta has the potential to stop my child’s deadly, debilitating disease in its tracks.
I’ll be delving into what this means in a new blogging series, called Everyday CF. It will be a personal account of the issues that people with CF and their loved ones face on a daily basis, told through the perspective of a parent. I’ll talk about our family’s journey, our push to get Trikafta, our fundraising efforts, and our hopes for the future.
Thank you for reading.
shaunarempel 