The Benefits and Perils of Social Media
Every few months, I like to take breaks from social media. Sometimes these breaks are total, self-enforced social media blackouts. I delete the apps on my phone, use another app to block the…
Mutations & Conversations
— Tré LaRosa
Tré LaRosa is a scientific project manager, patient advocate, and writer. He has cystic fibrosis (CF) and carries two copies of the F508del mutation. He’s been on Trikafta since 2019. He writes about science, living with CF, grief, family, and everything in between in an effort to get you thinking about what it means to be human. He lives in Arlington, Virginia with his fiancée Jessica and their two wonderful, lazy dogs, Duncan and Leo. He enjoys playing sports, being outdoors, and reading — and especially buying more books.
Featured Post
What is self-disclosure, and would it benefit me?
Throughout my life, I’ve felt comfortable self-disclosing to schools and employers that I have cystic fibrosis (CF). Self-disclosure — defined as “the sharing of personal information with others that they would not normally…
Read more
Reflecting on the First Year of My Column, ‘Mutations & Conversations’
This column was my first official writing gig. I started my blog almost three years ago, but my posts were inconsistent and didn’t have a clear voice. “Mutations & Conversations” provided me…
I Spent a Day On Capitol Hill Speaking with Lawmakers About CF and Healthcare
Last week, I was invited to speak to the Cystic Fibrosis Foundation to discuss my personal experiences with cystic fibrosis (CF). Coincidentally, my speech happened to fall on the anniversary week of the beginning…
The Resiliency of the Human Spirit
Few phenomena fascinate me more than human happiness. So often we get caught up in the idea that we would be happier if so-and-so happened. I’m sure I won’t be the first to tell…
Why the CF Community Should Be Concerned About Climate Change
Climate change is an emergency facing humanity. As we continue to burn fossil fuels and release greenhouse gases, solar heat levels build up in the atmosphere, which acts as an incubator, causing our…
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…
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…
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…
‘Everything’ Will Never Be Perfect, and That’s OK
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…
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…
Is it Ethical to Have Another Child Once You’ve Had One with CF?
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…
Finding My CF Community Has Restored My Sense of Belonging
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…
Your CF Community
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
