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…
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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While the results of a recent study investigating how financial stress affects the cystic fibrosis (CF) community are alarming, they’re not surprising. I think it’s a perfect example of why this issue needs to be taken more seriously. For the study, published last month in the Journal…
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…
All interpersonal relationships are a power struggle. With our friends, family, caretakers, providers, co-workers, and everyone else, we are pushing and pulling, and giving and receiving power in one way or another. That’s not to say that everything in life is transactional; you don’t hold the door for someone and…
We need to come to grips with a problem deeply affecting the cystic fibrosis community. It’s an issue that we don’t talk about much: chronic pain and its relationship to depression and anxiety. It’s a multifaceted subject: Not only are rates of depression and anxiety higher in people with cystic…
Humans are creatures of habit. We become accustomed to our circumstances. Most of us complain about our boring routines, but when they are disrupted, we can feel almost separated from our reality. Routines are a form of comfort, a gauge of where we’re at in our lives, professionally, physically, and…
2019 has given me much to reflect upon, including which of my columns are my favorites from the year. My chosen columns convey what I set out to do when I began writing “Mutations & Conversations” some 16 months ago. I hoped to push the envelope and encourage conversation…
I’ve found that one of the most fulfilling things I can do in this life is to work toward a better world. It’s why I wrote a column a few weeks ago about building a diverse coalition: The more diverse a coalition working for a better world is, the…
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