As you may have noticed, the world is having a bit of a moment right now. I started self-isolating as soon as the first case of the new coronavirus appeared in my county, which means I’ve been inside for a long, long time. It turns out that it’s…
Becoming Visible – a Column by Elizabeth Rogers
Lately, I’ve had a lot of fears. Like others in the global cystic fibrosis community, I’m self-isolating. I follow the CF Foundation’s COVID-19 plans religiously, and much of my county is sheltering in place, with most businesses closed. I’m fortunate to live with my…
A few months ago, I was chatting online with the parents of an infant who was newly diagnosed with cystic fibrosis (CF). They discussed how their lives would change and the precautions they’d have to take with CF in their lives. Most seemed sensible to me — no…
I’ve been fortunate to start taking Trikafta, a next-generation, triple-combination treatment for cystic fibrosis. My journey began in December, but it hasn’t been the easiest path to walk along, as I’ve encountered unexpected twists and turns. How Trikafta affects someone’s relationship with their…
A cliché exists in the world of reality TV: the contestant who says they’re not there to make friends. I never meant to be that person, but I’m afraid that’s whom I’ve become. When you have a rare disease like cystic fibrosis, which affects more…
It’s hard not to dwell on all of the future plans I might have had if cystic fibrosis (CF) hadn’t entered my life. Things seemed limitless as a child. If you had asked me what I wanted to be when I grew up, I…
It’s time to move forward. The recent approval by the U.S. Food and Drug Administration of the triple-combination treatment Trikafta (elexacaftor, tezacaftor, and ivacaftor) has sparked hope in the cystic fibrosis community. While it’s not a cure, the therapy has shown to have positive…
We need to talk about pain. Growing up, there was a clear delineation in my mind: Cystic fibrosis (CF) could be painful sometimes, but it wasn’t a disease that caused constant pain. It was almost a mantra in my mind: “At least I’m not always…
I have what some might call a bad habit. I can easily spend hours a day playing video games. My favorites are role-playing games that allow me to create my own character, down to the most minute details of their appearance and backstory. It’s common…
Life with cystic fibrosis (CF) has made me all too aware of the ticking clock. Having a natural tendency to be impatient, I’m a person who wants things done and over with now. Results have to be instant or they’re unsatisfactory. What I want…
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