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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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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
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
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
Kianna holding her dog in the woods.


How I Got Through the Forest Fires in Oregon

My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper. 

Kianna McAdams
| 7 min read
Maddy smiling in her college dorm next to her bed.


How CF Taught Me to Be Flexible

When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.

Maddy Hamp
| 5 min read
Rose playing the board game Monopoly in her hospital bed.


Taking the Reins of My Own Care

One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.

Rose Keller
| 6 min read
Betsy Sullivan smiling at graduation.


People With CF Are Living Longer. What Does That Mean for Our Care?

I asked the Cystic Fibrosis Foundation’s Dr. Whitney Brown about how cystic fibrosis care might change as the CF population grows, lives longer.

| 6 min read
Anna wearing a mask holding a celebratory cake for one year of having cancer.


Colon Cancer One Year Later

I was diagnosed with stage IV colon cancer. After one year, I’m still fighting a tiring battle with it and cystic fibrosis, but I won’t quit.

Anna Payne headshot
| 5 min read
Rima Manomitis smiling in a bathing suit.


How I've Learned to Accept My Body and Its CF Battle Scars

Despite the scars and appearance-altering side effects of medications, I am proud of what my body has survived in the face of cystic fibrosis. Being a brand ambassador has lifted my spirits and led to a greater acceptance of my body, which has withstood a double-lung transplant, a feeding tube, and a port.

| 6 min read
Morgan Barrett outside smiling in a selfie photo.


Losing My CF Identity

Now that I am feeling healthy on Trikafta®, I no longer feel special for thriving despite the challenges of cystic fibrosis. I don’t feel like I belong in the CF community anymore, and I miss that sense of camaraderie that comes from a shared struggle.

| 7 min read
Anna Payne with a mask sitting in a hospital chair.


34 and Living With Colon Cancer

At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.

Anna Payne headshot
| 9 min read


Six Tips to Help You Incorporate Self-Care While Managing Your CF

While you are grinding through a seemingly never-ending cycle of cystic fibrosis treatments, it also can be helpful to engage in self-care activities that bring you happiness. This nurturing routine can help you keep perspective and remind you of why you are undergoing all these treatments in the first place.

| 4 min read