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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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Allissa smiling and posing in her pageant crown and sash, holding a bouquet of flowers


CF Can’t Stop Me From Doing What I Love

Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.

Allissa smiling on the beach while holding an iguana with a lizard on her head
| 3 min read
Natalie using a nebulizer and vest in a hospital bed


Chasing a Diagnosis

It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of cystic fibrosis-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.

A headshot of Natalie Keas
| 6 min read
Aliyah and her husband holding Starbucks cups in the car and smiling


Finding Myself After Starting Trikafta

Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.

A selfie of Aliyah Novelli
| 6 min read
A screenshot of a group Zoom meeting with Kristina Robinson and twelve other adults with CF


The Power of Meaningfully Connecting With Your Peers

Driven by a career in community health and a late cystic fibrosis diagnosis, I discovered my purpose through volunteering with the CF Foundation. Inspired by the power of connecting with my peers, I went on to develop my own program designed to support other adults in the CF community. 

| 4 min read
Sarina smiling in front a school white board that says "How's it going?"


6 Tips for A Successful School Year From a Counselor With CF

Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.

Headshot of Sarina Sandstrom Lynn
| 9 min read
Ryan holding his two daughters at the finish line of a race


Learning to Fuel My Body as a Runner With CF

When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.

Ryan Grass headshot
| 5 min read
Chris Runge smiling at the camera and laying in a hospital bed


There Is No Health Without Mental Health: Hope for the Future

As someone who has fought to have my mental health struggles acknowledged in the past, I was heartened that the third plenary at this year’s North American Cystic Fibrosis Conference focused on the integration of mental health into CF care and research, as well as the mental health well-being of CF care teams. 

A professional headshot of Chris Runge
| 7 min read
Annette smiling and posing with her husband and daughter in front of a statue.


The Future for Many Lies in Advancing Infection Research

The second plenary at this year’s North American Cystic Fibrosis Conference focused on infections, how they are evolving as CF evolves, and how many people with CF still struggle with infections despite modulators. As a person with CF, the evolution of infection research has accelerated progress in my own life.

A headshot of Annette Perry
| 5 min read
Ruby Steuart selfie with a mask.


What the Promise of Genetic Therapies Means to Me

I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.

A light-skinned woman with light-colored hair
| 3 min read
Abigail Gordon sitting in a wheelchair and showing off her pumpkin ostomy pouch cover.


Coping With Gastrointestinal Problems

My path to a total colectomy was long and challenging. Now I want to share what I learned about self-advocating for necessary medical care and coping with a surgically created opening on my abdomen called a stoma.

Abigail sitting outside and smiling with her dog
| 6 min read
Kelcee posing and smiling in her cheerleading uniform


Dealing With Judgment

Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported. 

A headshot of Kelcee Braden in her cheerleading uniform
| 7 min read
Julie hiking in the woods and turning around to smile at the camera


A CF Diagnosis at My Age?

I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.

A headshot of Julie Carel
| 7 min read