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.

Our Relationships with Our Doctors Are Stronger When We Self-advocate

Doctors receive training in particular specialties and, in some cases, subspecialties. But “specialties” and “subspecialties” can be described as a “broad array of diseases” and “broad array of fewer diseases.” I’m not trying to dismiss the expertise of medical professionals or reduce them to their skill sets. I’d never…

Is There an Upper Limit to the Improvements That CFTR Modulators Can Provide?

The cystic fibrosis community has access to three cystic fibrosis transmembrane conductance regulator (CFTR) modulators right now: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor). These CFTR modulators are each approved for specific mutations and age groups. If you’ve been following the progress in this area, you’ll be…

The Long-term Effect of Disability Language

The life of a person with CF is constantly affected by language. A common debate in the community is how best to label us. Is it better to call someone a CFer or a person/adult/child with CF? To some, CFer means their life is singled down to one identifying characteristic,…

Transforming Adversity into Progress

In my senior year of high school, I went to the exercise section of Dick’s Sporting Goods and searched for boxing gloves. I had decided on a whim that I wanted to learn how to box. At the time, I was mostly weight lifting, and the majority of my…

My Recent Health Revelation Got Me Thinking About Infertility and CF

Most clinical manifestations of cystic fibrosis (CF) are in the lungs, pancreas, gastrointestinal tract, and sometimes the sinuses, kidneys, and liver. Unsurprisingly, these concerns attract most of the attention. And CF’s main clinical manifestations should warrant most of the focus. But it’s crucial that we don’t forget the “less serious”…

How to Overcome the Scourge of Confirmation Bias

Have you ever been caught up in a heated discussion with someone who continually refers to stories that confirm their beliefs? Or had a conversation in which it seemed as if the other person had read only the research that confirmed their side and had no reasonable counterarguments to your…

Science Literacy Is a Necessity in the CF Community

“Bill! Bill! Bill! Bill! Bill!” Many millennials immediately recognize the iconic jingle that was the introduction to the educational (and entertaining!) children’s science show “Bill Nye: The Science Guy.” Bill Nye was the only nonacademic exposure to science that some American kids enjoyed. At least, it wasn’t academic…