Mutations & Conversations
— Tré LaRosa

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,…

My sister, Alyssa, has been a frequent subject of my writing since she died in 2018 at age 29. Even when I wasn’t sure of myself as a writer, she was highly supportive of my burgeoning interest in the craft. After she died, I determined that writing, especially about grief…

Last week, my parents joined hundreds of advocates on Capitol Hill in Washington, D.C. Along with others who have loved ones with cystic fibrosis (CF), they met with the staffers of senators and representatives from Kentucky. While there, my parents explained what CF is and all the medications…

A difficult aspect of grief is that, at some point, we may cope by becoming numb and calloused. This is not a weakness, but rather a deeply human response. We are a resilient species. We choose to love intensely, even knowing that such love may end in incalculable pain. After…

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)…

I struggle with needing help and not having answers. I’ve always wanted to be calm and collected in challenging situations. I don’t like feeling panicked or out of control, which means I don’t like expressing emotions before I’ve had time to process and understand what I’m feeling. Over the years,…

Over the years, I’ve spent a lot of time on the phone with various organizations involved in my healthcare. Probably the most frustrating thing is having to cycle from one person to another, who then directs me back to the first person I talked to. It seems like it’s only…

While the results of a recent study investigating how financial stress affects the cystic fibrosis (CF) community are alarming, they’re not surprising. I think it’s a perfect example of why this issue needs to be taken more seriously. For the study, published last month in the Journal…

Eight years ago, I walked down the corridor that connected the hospital to the clinical research wing. I arrived at what felt a bit like a movie set, but was actually the floor where clinical trial participants would receive intravenous infusions of either a placebo or the investigational drug. It…

I recently watched a film that depicted a harrowing scene between the protagonist, a prodigious graduate student, and his physician. In the scene, they sit in a sterile, halogen-lit corridor as the physician shares the devastating news that the student has amyotrophic lateral sclerosis (ALS). Much like cystic…

I stared at the screen in disbelief. My lung function had declined more than 20 percentage points. I was stunned. I had undergone hundreds of pulmonary function tests before, and even though I wasn’t feeling great, none had shocked me like this one. I knew I’d need antibiotics, but…