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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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Madison smiling next her husband, who is holding their daughter Karleigh

BLOG

How One Diagnosis Can Change Everything

When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.

Madison Patterson
| 7 min read
Inka standing at the finish line of her marathon with her arms out wide

BLOG

Navigating the Emotions of Chronic Lung Rejection

Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.

Headshot of Inka Nisinbaum
| 7 min read
Jaclyn smiling with her husband and her son, Major, in front of a football field

BLOG

Deciding When to Remove My G-Tube as A Kid With CF

With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.  

Jaclyn-Strube-Headshot
Major Strube wearing a football jersey
| 6 min read
Ashley smiling and pointing to her purple t-shirt, which features a white graphic of lungs

BLOG

My Experience Leading Up to Transplant

As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.

A headshot of Ashley Main
| 5 min read
Samantha standing in the balcony of a legislative chamber

BLOG

From CF Mentorship to Lifelong Friendship

The CF community supported me so much during my two double-lung transplants, so I’m eager and excited to give back. One of the ways I got involved was by becoming a mentor, which is how I formed an incredible bond with my friend, Brittani.

Samantha-Rick-Headshot
| 9 min read
Annaka Haynes smiling and wearing blue scrubs with a stethoscope around her neck

BLOG

Becoming a Nurse to Advocate for Patients

Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients. 

A headshot of Annaka Haynes
| 6 min read