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…
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.
My column, “Mutations & Conversations,” was first launched in 2018 after I observed Cystic Fibrosis Awareness Month by writing a blog post every day in May about living with cystic fibrosis (CF). This decision to write this series was made in the midst of grief: My sister,…

This Is What Makes Me Rare
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…
So This Is How My Life Is Now
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…
My CF Is My Burden Alone
It is natural that we grow attached to the people with whom we develop relationships. That’s just how it is. There’s not much more to it. The early days of friendship are full of tiptoeing around heavy topics or shying away from our truest selves. That’s what makes developing friendships…
I learned long ago not to expect everyone to agree with me. I also realized that disagreement isn’t inherently wrong. From a young age, I was told that I should become a lawyer because I’ve always loved to engage in discussions. In retrospect, those comments might not have been complimentary,…
I’m writing this column on the day I start treatment with Trikafta (elexacaftor/tezacaftor/ivacaftor), a new cystic fibrosis (CF) medication that I believe will be regarded as an inflection point in CF history. If you’re involved in the CF community or have been on social media in recent weeks,…
Last week, the Cystic Fibrosis Foundation launched a new initiative called “Path to a Cure.” A press release called it “an ambitious research agenda to deliver treatments for the underlying cause of the disease and a cure for every person with cystic fibrosis (CF).” It added: “The Foundation is…
Giving My Anxiety a Name
Lung function — typically measured by forced expiratory volume in the first second (FEV1) — is the boogeyman for people with cystic fibrosis (CF). Whether it’s our lung function, our weight, our BMI, our liver levels, or our glucose levels, our lives are an assemblage of numbers, values, qualifiers,…
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