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…
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.
Note: This column describes the author’s own experiences with Trikafta (elexacaftor/tezacaftor/ivacaftor) and Orkambi (ivacaftor/lumacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last Friday, I attended a Rare Disease Day event hosted by the National Institutes of Health (NIH)…

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,…
A few weeks ago, an article with the headline, “Vertex sinks on reports of deaths of patients taking cystic fibrosis drug,” circulated online. The medication in question was Symdeko (tezacaftor/ivacaftor). I saw that the article was being shared among my many friends with cystic fibrosis (CF) and within…
I dislike making other people feel uncomfortable. Turning a light-hearted conversation into a heavy one by referring to my sister’s death, or standing up for myself to reduce infection risk, is the social equivalent of getting an IV to me. Part of my journey has been learning to approach my…
Toward the end of my time in college, I faced an identity crisis. For more than seven years, I had been dead set on becoming a physician. I had no question in my mind: I wanted to use my experience of cystic fibrosis (CF) for good by training to…
Every few months, I like to take breaks from social media. Sometimes these breaks are total, self-enforced social media blackouts. I delete the apps on my phone, use another app to block the websites, and even recruit a friend to change the passwords. Social media — like other methods…
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