Cystic fibrosis (CF) has a way of stripping one’s agency and limiting control over circumstances and the future. It is difficult, isolating, and can lead to dark places. For me, advocacy has been a balm that tempers feelings of anxiety, hopelessness, and isolation. Over the years, I’ve served…
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.
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My sister, Alyssa, has been a frequent subject of my writing since she died in 2018 at age 29. Even when I wasn’t sure of myself as a writer, she was highly supportive of my burgeoning interest in the craft. After she died, I determined that writing, especially about grief…
Artificial intelligence (AI) is just about everywhere right now, capturing the world’s attention and economic markets. Along with near-daily headlines about what AI promises to do for — or to — humanity, there’s also been some very promising advances in the use of AI in medicine. It seems that…
Throughout my life, I’ve felt comfortable self-disclosing to schools and employers that I have cystic fibrosis (CF). Self-disclosure — defined as “the sharing of personal information with others that they would not normally know or discover” — has allowed me to claim agency and decide what I want shared…
A few days ago marked what would have been my sister Alyssa’s 37th birthday. To pay homage to her this year, I’m reflecting on what it’s like to have cystic fibrosis (CF) myself as well as a sibling with CF. When people learn that individuals with CF are advised…
Hope is something I have often reflected on throughout my life. In fact, my first tattoo was of a Latin phrase commonly referenced in the cystic fibrosis (CF) world: “Dum spiro spero,” which means “While I breathe, I hope.” But my perception of that phrase has changed over…
The benefits of being in nature are well-documented. There are the physical benefits, such as improving blood pressure and immune activity. And then there are the mental benefits, with people spending time in nature seeing reduced rates of depression and anxiety and increased vigor. These findings don’t…
My friend Steve Silberman died a year ago on Aug. 29, 2024. I was familiar with Steve before he knew me. Steve had written a highly popular and applauded person-centric history of autism titled “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.” His writing, much like my…
I have been thinking a lot about aging lately. I think about it when I notice that it takes my dog, Duncan, a second longer to stand up after a nap; I think about it when I notice a gray hair in my beard, a privilege; I think about…
Growing up, one of the worst parts of having cystic fibrosis (CF) was the gross orange cocktail I had to drink as part of my annual oral glucose tolerance test. This nightmarish, faux sports drink is full of glucose and is used to screen for diabetes. For years,…
Like many others, I never want to feel like cystic fibrosis (CF) is holding me back in any way. Yet the condition has shaped many of my experiences and taught me so much, including resiliency. At different times — mostly during periods of stability and complacency — I’ve forgotten…
When I was asked to write this column over two years ago, I was thrilled, but I wasn’t quite sure what I wanted to write about. I knew I would have some leniency to tackle different subjects, and I didn’t want to be boxed in. But I also wanted to…
When I took Advanced Placement psychology in high school, a few subjects stuck out to me as being intuitive. I was weirded out by this because the majority of school lessons were not intuitive. Math, chemistry, and biology are logical and scientific, but I don’t naturally understand cells, or how…
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