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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.

More community posts
Emma smiling in a hospital bed with a feeding tube.

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Having an Eating Disorder and CF

After gaining weight on IV steroids to treat my cystic fibrosis, my self-image became distorted, and I developed anorexia. I realize that I am not my illnesses, but they are a part of my life that I can’t hide anymore.

Emma Selden Headshot
| 8 min read
Amanda laying down on a hospital bed smiling.

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What I Wish I Would Have Known Before Trikafta

Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.

| 6 min read
Sydney Reichart laying in a hospital bed with her Corgi.

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Grieving the Life I Once Had

Even though Trikafta saved my life, I am still dealing with the emotional trauma of being so close to death and missing the person I was before I got so sick.

Sydney Reichart headshot
| 7 min read
Lauren and her mom smiling

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Coping With Comparisons on Social Media When You Have CF

When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health

Lauren Vignola headshot
| 5 min read
Emma Selden in the Hospital

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Letting Go of People Who Didn’t Accept My CF

When I was in high school, I tried my best to hide my CF from my friends. When this put my health at risk, I knew I had to find friends who would accept me and to become a better advocate for myself.

Emma Selden Headshot
| 7 min read
Dorothee-Marx-Hospital-Selfie-Featured-Rectangle

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Acknowledging My Trauma Has Made Me a Better Advocate

Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.

Dorothee-Schneider-Headshot-square
| 7 min read