Mutations & Conversations - a Column by Tré LaRosa

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…

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…

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…