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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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Matison smiling in a hospital bed holding a plush toy in the shape of lungs


Voicing My Health Needs Before and After Transplant

I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.

A headshot of Matison Deaton smiling outside
| 7 min read
A photovoice study participant embracing her toddler son.


Understanding the Intersection of Parenthood and CF

Researchers from the University of Pittsburgh wanted to better understand the realities of parenting as a person with cystic fibrosis, so they collected firsthand accounts from members of the CF community.

A professional headshot of Olivia Stranksy
| 5 min read
Josh giving a thumbs up at the finish line of a marathon, wearing a medal around his neck.


How Hard Truths From My Care Team Helped Me Qualify for the Boston Marathon

At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon. 

A professional headshot of Josh Weiss
| 6 min read
Ashely holding a nebulizer to her mouth in front of a wall of art.


Listening to My Voice

My voice plays an important role in managing my cystic fibrosis. Breathing techniques that I have learned as a singer help me perform pulmonary function tests and my voice can signal a change in my health — if I listen to it.

| 8 min read
Mark Tremblay sitting on the steps of the courthouse in his childhood town.


What I Learned Growing up With CF in Appalachia

I suffered a great deal of damage growing up with cystic fibrosis in a small Appalachian town — physically and emotionally. But with a lot of hard work, I have been able to overcome some of the emotional scars.

| 6 min read
Christa Lux smiling and grabbing her hat in front of the Grand Canyon


My Unexpected CFTR Modulator Side Effects

Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.

A selfie of Christa Lux
| 6 min read
Keith Connolly laying on a couch turned away from the camera


As People With CF Live Longer, Their Needs Are Changing

My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.

A headshot of Teresa Connolly
| 4 min read