Mutations & Conversations - a Column by Tré LaRosa

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…

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…

This column was my first official writing gig. I started my blog almost three years ago, but my posts were inconsistent and didn’t have a clear voice. “Mutations & Conversations” provided me with a space to write about the many facets of life with cystic fibrosis (CF) without…

Last week, I was invited to speak to the Cystic Fibrosis Foundation to discuss my personal experiences with cystic fibrosis (CF). Coincidentally, my speech happened to fall on the anniversary week of the beginning of this column — which has been critical to the development of my skills as…

Few phenomena fascinate me more than human happiness. So often we get caught up in the idea that we would be happier if so-and-so happened. I’m sure I won’t be the first to tell you that the grass ain’t always greener on the other side. This idea is known as…