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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Art Brace standing in front of a vista in Tuscany, Italy.


Changing Expectations: What Living Longer Means for Care

People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.

Art Brace Headshot
| 5 min read
Debra Lase standing outside by a tree


Finding Out I Have CF at 69

I was recently diagnosed at 69 years old. Although it helped explain why I had been sick so often and gave me a new community, I can’t help but think about the lost time when my disease went untreated.

Debra Lase Headshot
| 7 min read
Photograph of Melissa Shiffman and her husband standing outside


Turning 50 With CF

I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.

| 7 min read
Amanda Biederman in the hospital with oxygen tubes and a port.


What I’ve Learned About Self-Advocacy as a Person with CF and Nurse

Not only am I a member of the CF community, but I’m also a member of the clinical community — an oncology nurse — and I have had to endure hard lessons to learn to advocate for myself and get the medical care I need.

Amanda Biederman Headshot
| 12 min read
Portrait of Leslie Colwell and her immediate family


Living 26 Years Post-Transplant

In the 26 years since my double-lung transplant, I’ve lived through cancers and other post-transplant complications. It’s been difficult at times to remain positive, but I won’t give up. I’m a fighter.

Portrait of Leslie Colwell in black and white
| 6 min read
Patti Prince posing with her family and dog


What Living 16 Years Post-Transplant Has Taught Me

I had double-lung and liver transplants 16 years ago. Although nothing is guaranteed after transplant, here’s what I’ve learned maintaining my health after transplant.

Patti Prince headshot
| 7 min read