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CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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James laying on the couch with his dog


Coming Full Circle: Becoming a Genomics Scientist with CF

I have always been very interested in science, eventually leading to my career as a genomic scientist. My curiosity helped me cope with the uncertainties of cystic fibrosis, leading me to many academic, professional, and personal opportunities that gave me a more expansive view of how my different roles and identities can build upon one another. 

| 10 min read
A selfie of Frederick sitting in his car


How CF Influenced My Career

I had a number of professional aspirations while growing up, but cystic fibrosis caused me to play it safe. Looking back, I wonder how my life would have been different if I didn’t let CF limit me. 

Frederick Merz taking a selfie in front of the Okayama Castle
| 6 min read
A scenic photo of the sun shining through the woods


Managing My Mental Health as a Teen With CF

Spending so much of my childhood in and out of the hospital and doing CF treatments was already enough to deal with, so it felt easier to keep my mental health challenges hidden. However, speaking up about my feelings helped me learn that caring for my mental health is as important as taking care of my physical health. 

A blue background with the initials NH in white text
| 4 min read
Steph Hansen smiling and walking down a cobblestone road


My Journey With Nonsense Mutations

Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.

A professional headshot of Steph Hansen
| 6 min read
Ashley wearing a Directors t-shirt and instructing an actor on the set of a film


How It Feels to See CF on Screen

Seeing cystic fibrosis portrayed in film and on TV is a mixed bag, and often my disease is overly dramatized to get more views. But I still think there’s value in making people more aware of CF.

Ashley Wilson
| 5 min read
Mary Katherin smiling with a coworker in the CF care center where she works


A Message to My CF Patients

Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being. 

A professional headshot of Mary Katherine
| 4 min read