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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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Laura Steuer smiling wearing a grey turtleneck standing in front of a blue and white painted wall.

BLOG

How a Small Regional Hospital Helped Me Realize the Value of CF Care

I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.

Laura Steuer
| 5 min read
Monique smiling with her mom hugging her and leaning on her shoulder.

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Relearning Who I Am After Trikafta

After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.

Monique Wiegand
| 6 min read
Brian smiling sitting on a mountain top.

BLOG

What Traveling Has Taught Me About CF

My experience traveling with cystic fibrosis has taught me that a chronic illness should never slow you down. It may require extra planning and packing, but it’s worth it and definitely doable.

Brian Donahoe
| 6 min read
Natalie smiling with her mask on sitting at a desk.

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What It Means to Have a Full-Time Job With CF

Throughout my life with cystic fibrosis, I have marked many milestones. My most important one yet is holding a full-time job while managing my health.

Natalie Keyes
| 7 min read
Joey Pelletier smiling with his cat.

BLOG

Becoming the Role Model I Wish I Had

I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.

Joey Pelletier
| 6 min read
Brogavantty Dunwoody smiling in scrubs and giving a peace sign.

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How Having CF Shaped My Nursing Career

When I became a nurse, I was determined to be punctual and reliable, and I excelled despite my cystic fibrosis. But on the advice of a CF doctor, I changed my career trajectory, which at first caused heartbreak, but eventually led to a leadership opportunity.

Brogavantty Dunwoody
| 5 min read