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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

BLOG

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

BLOG

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

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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.

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

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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

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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

BLOG

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