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…
Mutations & Conversations - a Column by Tré LaRosa
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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