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 Work Next to CF Experts, and I Know They Really Care

For nearly three years, I’ve worked alongside brilliant CF doctors, scientists, and PhDs at a great research hospital. Before that, during college, I worked closely with CF scientists and PhDs at the University of Kentucky. All in all, I have about five years of experience in CF science.

How We Capitalize on ‘Five Feet Apart’

The CF community’s strength is in its powerful, far-spread voice. For people with a chronic disease, and doubly so when that chronic disease is rare like CF, it is critical for the community to be involved and educated. The CF community is exactly that. When a perfect storm…

Let’s Talk About Death and Grief

I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine feelings and thoughts with others. I enjoy talking about sports, engaging in light banter, and dissecting the plots of TV shows — even why “The Bachelor” or “The Bachelorette” made the wrong choice. I’m…

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…