Mutations & Conversations
— Tré LaRosa

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 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,…

I’ve always been able to eat whatever I wanted. That’s just a part of growing up with CF. Kids are picky eaters to begin with, but when you combine the inability to gain weight with pickiness, it results in headaches and frustration. So, when I was a kid, our doctors…

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…

Since I work in a cystic fibrosis (CF) lab and prioritize being open about my experiences with the disease, I’ve had some pretty heavy philosophical conversations with scientific peers. One of those conversations has been about my perspective on the concept of passing on the CF gene. CF is a…

Growing up, I was insulated from the wider cystic fibrosis (CF) community. Since I had a sibling with CF, I didn’t feel the need to meet other kids with CF. My sister Alyssa and I had an amazing bond in which CF was a part of our lives. It allowed…

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”…

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…

“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…

My depression and anxiety went undiagnosed and untreated for years. I knew something wasn’t right, but I didn’t think it was “bad enough” for me to be officially diagnosed with depression or anxiety. My life wasn’t “bad” — my health was fine, and I was a good student…

Three years ago, I was hardly involved in the broad cystic fibrosis (CF) community. My only involvement with CF – aside from the fact that my sister and I have it – was some undergraduate research in a CF lab and taking part in Great Strides walks over the…

When we say “me” or “I,” what exactly are we referring to? Are we referring to our bodies, our minds, or the combination of the two? It’s both a scientific and philosophical question, who we are. In a casual manner, we often speak in the first person when referring to…