Mutations & Conversations - a Column by Tré LaRosa

motivation Tré is a 27-year-old living with cystic fibrosis in Pensacola, Florida who works as a research lead for BioNews Insights. He is an extremely passionate advocate for disabled rights and people living with chronic disease, especially cystic fibrosis. His sister, Alyssa, died at 29 due to chronic rejection of her bilateral lung transplant, pushing him further into the fight for a better world for all. “Mutations & Conversations” discusses the science and sociology that binds us all. He also loves his golden retriever, Duncan, very much.

I See Poetry in the Scientific Process

I walk two paths: One is that of logic in my career as a scientist. In this field, it’s critical to remove emotion from the picture as much as possible. I work as a cystic fibrosis (CF) scientist so that isn’t always easy, but it is important. The…

The Power of Escapism

One of the first fiction books I read in adulthood was a book called “The Amazing Adventures of Kavalier & Clay,” by Michael Chabon. The story of how I came across “Kavalier & Clay” begins in high school. In my senior literature class, we had to write…

CF Science Is Unexpectedly Beautiful

During my sophomore year of college, the background on my computer screen was a cystic fibrosis transmembrane conductance regulator (CFTR) protein, specifically a visualization of its quaternary structure. It looked something like this image. The simplified graphic isn’t an exact representation of what the CFTR protein looks…

CF Forces Me to Have a Different Long-term Outlook

In high school, I aspired to be a pulmonologist for obvious reasons: I wanted to aid the CF community by directly helping patients. It seemed logical. I dreamed of becoming a pulmonologist because my CF doctors had been some of my greatest role models. They were quite literally…

My Family Had 2 Children with CF

It was unlikely that my parents would bear two children with CF. When both parents carry a CF mutation but don’t have the disease itself, there is a 1 in 4 chance that a child will have CF. To determine the likelihood of two events independent of one…

My Thoughts on Exercise and CF

It’s hard to understate the benefits of exercise for healthy people, let alone people with CF. According to the Mayo Clinic, some of these benefits include: It controls weight. It combats health conditions and diseases. It improves mood. It boosts energy. It promotes better sleep. All of these…

The Burden of Care in the Life of a CF Patient

A couple of months ago, I did back-of-the-envelope calculations on basic CF stats. Here’s what I asked: In a year, how much time do I spend doing treatments? How many pills do I take? As I wrote last week, the spectrum of CF presentation is about as…

The Diverse Spectrum of Health Across the CF Community

If you’ve ever met more than one person with cystic fibrosis, it’s likely they had very different experiences than you. First, their approach likely will be different; chronic disease affects everyone differently mentally, so some are vocal and “embrace” it, while others are quieter and choose to consider it a…

Empowering Children by Educating Them About Their CF

One of my earliest memories from elementary school was leaving class a little early before lunch to go to the nurse’s office to take my enzymes, always accompanied by a school peer. I wasn’t allowed to bring my enzymes with me to school because entrusting a young kid to take…