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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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Peter-Kefa Huggins and his son Gabriel doing nebulizer treatments together


An Unexpected CF Diagnosis
July 18, 2024 | 5 min read

My son’s cystic fibrosis diagnosis turned our world upside down, but the real shock came when I learned I also have CF.

A headshot of Peter-Kefa Huggins
Caitlin Coppock smiling in the desert during golden hour


Reclaiming My Identity After Starting Trikafta
July 15, 2024 | 8 min read

Initially, I was reluctant to start a new medication, but once I began taking Trikafta®, everything changed. I could breathe easier, sleep soundly, and, for the first time, feel a sense of freedom from the constant focus on my health. Now, I’m navigating the new challenge of finding my identity after Trikafta. 

A selfie of Caitlin Coppock
A teen advocate speaking with a congressional staff member


The Impact of Advocacy Beyond the Hill
July 3, 2024 | 6 min read

Every year, teens like me advocate for cystic fibrosis — either sharing their own experiences with CF or speaking on behalf of a loved one. This experience can have a huge impact on us, even after we return to our daily lives.

Bellamy - Carolanne's son - holding Easter baskets in their backyard


Why We Took Our Son Off Trikafta
July 2, 2024 | 7 min read

Even though our son had cystic fibrosis, we found hope in the drug Trikafta®. Side effects forced us to make the difficult decision to take him off the medication.

Carolanne Cimino
Julie Carel smiling on the beach in front of the ocean


How Bronchiectasis Led to My CF Diagnosis
June 27, 2024 | 5 min read

Discovering I had bronchiectasis led to my cystic fibrosis diagnosis at 67 years old. But the delay in diagnosing my bronchiectasis highlighted a lack of awareness about this disease. 

A headshot of Julie Carel
Holly standing with her arm around her daughter Sophia while they're standing in the woods


Navigating Single Parenting a Child With CF
June 25, 2024 | 6 min read

Navigating my daughter’s cystic fibrosis is not something I thought I would be doing alone. However, my focus remains on her health and happiness as I learn to adjust to life as a single mom.

A headshot of Holly Grossenheider