I used to dislike surveys, polls, and questionnaires. I understood why they existed — customer or patient feedback is important — but I never really saw anything change once I took a survey. I hadn’t considered that perhaps my feedback was unrealistic or didn’t represent the entire community. It wasn’t…
Mutations & Conversations
— Tré LaRosa
Tré LaRosa is a scientific project manager, patient advocate, and writer. He has cystic fibrosis (CF) and carries two copies of the F508del mutation. He’s been on Trikafta since 2019. He writes about science, living with CF, grief, family, and everything in between in an effort to get you thinking about what it means to be human. He lives in Arlington, Virginia with his fiancée Jessica and their two wonderful, lazy dogs, Duncan and Leo. He enjoys playing sports, being outdoors, and reading — and especially buying more books.
Featured Post
Last week, my parents joined hundreds of advocates on Capitol Hill in Washington, D.C. Along with others who have loved ones with cystic fibrosis (CF), they met with the staffers of senators and representatives from Kentucky. While there, my parents explained what CF is and all the medications…
I recently saw a meme in which a person is smiling or laughing in the first panel, then looks utterly dismayed in the second. The second panel’s overlay reads: “Tfw [that feeling when] I realize I’m being perceived by everybody else who ever interacts with me.” This meme is one…
I used to be ashamed about my insecurities. I believed that as a man, I was supposed to be strong. I was supposed to silently hate myself, my appearance, and my body, while projecting an immutable air of confidence. That was the “manly” way. My masculinity, my…
I can’t remember when I first fell in love with science. I loved learning about it and going on field trips, but I didn’t enjoy science fairs because I missed hanging out with my friends (although I did place second at a science fair with some assistance from my dad).
Two years ago, I found myself drinking a cup of coffee in a quiet coffee shop in downtown Chicago. I still struggled to call myself a writer or understand my writing goals. (Though, by this time, I had already been writing for CF News Today for a few months.) I…
Life would be much easier if every complicated disease or disorder weren’t so complicated. COVID-19, cystic fibrosis, depression — if they all manifested uniformly and could be treated the same across the afflicted population, the world would be much simpler. As always, life just isn’t that simple. About two weeks…
I used to scoff at the idea of saving money for retirement. It didn’t seem feasible to me to try to plan decades into the future. I accepted long ago that I wouldn’t live past 40, so why save money for a distant future if it was unlikely I…
A pandemic meets a life-changing medication. It sounds like the beginning of a modern love story. Last year, a film came out about two teenagers with CF who fall in love. If you’ve been even tangentially near the CF community, you’re probably familiar with it. To reclaim…
My last column, a letter to my younger self, was written before the pandemic. When the world first began to realize the havoc wreaked by COVID-19, I predicted I would be reading and writing more than ever. The converse ended up being true. Writing (my consolation) and reading…
Hey kid, You better brace yourself. Other adults in your life are already telling you this, but you better learn to listen up. Your parents know a bit better than you do, but I’ll give you this: You’re smart, you’re ambitious, you’re idealistic, and you have a sensitive heart. You…
My brain felt broken. I didn’t know what to do, even after three years of dealing with depression and anxiety. Our language around our mental health discourse is woefully insufficient. We don’t treat depression or anxiety the way we treat diabetes or cystic fibrosis or heart disease. We…
It probably won’t come as a shock if I say that growing up with cystic fibrosis is confusing for one’s identity. Cystic fibrosis requires a huge time commitment and affects most areas of our lives. We can choose to hide it, which probably isn’t the best idea, because then…
Your CF Community
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Explore More Columns
Discussion
Discussion
Discussion