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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A member of Kinley's care team wearing PPE and showing a toy to Kinley, who is sitting in a clinic room.


True Teamwork in CF Care

Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.

A headshot of Krista Kuska
| 5 min read
A portrait of Lauren with her husband and three children cuddling in bed.


The Importance of Self-Advocating After Transplant

My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.

A professional headshot of Gerry Sweeney
| 6 min read
Devanshi laying in the grass with a tree blossoming behind her


How CF Has Impacted My Mental Health

I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.

Headshot of Devanshi Dubey
| 6 min read
Jennifer and her son wearing Medieval Times crowns


It’s OK to Take Time to Rest

Life with cystic fibrosis can come with many recovery days. But it’s hard for me to avoid feeling guilty when I need time to rest and recharge. Working harder to be more productive and make up for the time I lost at work and with family while resting often leads me right back to my couch and needing to take another day to rest.

Jennifer Albright
| 7 min read
Cambrey White, her husband, and her son, Rowland, standing outside in a field.


Coming Together to Advocate for Our Sons

Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.

Cambrey White
| 7 min read
Chris's son, Benny, sitting on a large ball in a birthday crown.


Learning to Make CF Treatments Fun for My 4-Year-Old Son

When my wife and I learned that our son, Benny, has cystic fibrosis, we were concerned about how we would fit his treatments and care into our daily lives. We are grateful to have not needed to make many major changes like we anticipated, thanks to having a village around us and finding ways to make treatment time more fun.

Chris MacGuigan Headshot
| 5 min read