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My sister, Allison, and I want to take a moment to share our cystic fibrosis (CF) story, hoping to highlight both the personal challenges and the bond we’ve made throughout the years. Through all the ups and downs, we’ve learned the importance of community, advocacy and the difference that advanced research can make.
My diagnosis in June 1982 was a complete shock to our parents. They had never heard of cystic fibrosis. But once they had time to research and come to terms with what my diagnosis meant, they were determined to make sure that I would have an active and fulfilling life. Four years later, Allison was born, and we learned she also had CF.
Our childhood was full of memorable sleepovers with friends, days of horseback riding and even a month-long road trip across Canada. Overall, we were healthy and were able to experience normal childhoods, while doing our daily routine of enzymes, aerosol masks and chest percussions.
That changed once I reached adulthood. I struggled to maintain a healthy weight and my lung function declined. However, thanks to advanced research and the introduction to Trikafta, my life has completely changed.
As for Allison, she had a double lung transplant in 2014, which saved her life. Her health and energy levels have stabilized, allowing her to work and get back to doing the things she loves with the people she loves. But the transplant also introduced new challenges, like managing post-transplant diabetes and gastrointestinal side effects.
From childhood to adulthood, our journey with CF has been an experience that has both challenged and strengthened our bond. Growing up, we went through this journey together with our younger brother who doesn’t have CF, offering support, understanding and a shared perspective that only siblings in our situation can really appreciate. As adults, this bond has only gotten stronger, offering comfort during hard times and celebration in moments of victory.
We’ve seen firsthand the impact that advanced treatments can have. While these treatments have significantly improved our lives, we know that they are not a cure and, unfortunately, do not benefit everyone with CF. We want to see a world where CF is no longer a life-limiting condition. We dream of a future where every Canadian with CF has the chance to lead full and unrestricted lives.
Allison and I are passionate about helping Cystic Fibrosis Canada raise funds to support research that will help all people living with CF. Every gift, big or small, brings us closer to discovering new life-changing treatments and, ultimately, a cure for cystic fibrosis. Please give today!