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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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Black and white photo of a girl on a swing set in a butterfly costume.

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Living in the Gray Area

Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?

Álvaro La Parra-Pérez
| 6 min read
Madison in a hospital gown with her husband.

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Receiving My CF Diagnosis at Age 20

I felt like I was living with a secret disease because I could never find answers to what was causing the lump of mucus in my throat or the frequent cough that would often embarrass me at school or with friends. Then, finally, I uncovered the secret when I was diagnosed with cystic fibrosis at age 20.

Madison Patterson
| 9 min read
Jennifer smiling with her son.

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Coping With My Late Diagnosis

I was diagnosed with cystic fibrosis late; and the anger I felt was contagious for my son, who was dealing with his own diagnosis. But, I found support and am now focusing on the things in my life that I can control.  

Jennifer Albright
| 5 min read
Ainsley smiling at the hospital with an oxygen tube.

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How Listening to My Body Led to My CF Diagnosis

At 26, I was in and out of the hospital with bouts of pain and coughing up blood, with doctors telling me I had pancreatitis. It took a trip to a new hospital — and advocating for my health — before I finally got my correct cystic fibrosis diagnosis.

Ainsley Doherty
| 5 min read
Spencer laying in a hospital bed.

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How Pancreatitis Led to My CF Diagnosis

I had no idea what cystic fibrosis was — or that I had it — until six months of pancreatitis led to a diagnosis.

Spencer Barber
| 5 min read
Cambrey smiling with her husband and son.

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Struggling to Process My Son’s Rare Mutations

I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.

Cambrey White
| 6 min read