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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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Rose playing the board game Monopoly in her hospital bed.

BLOG

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.

BLOG

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.

Betsy-Sullivan-Headshot-sq
| 6 min read
Anna wearing a mask holding a celebratory cake for one year of having cancer.

BLOG

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.

BLOG

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.

Rima-Manomaitis-Headshot
| 6 min read
Morgan Barrett outside smiling in a selfie photo.

BLOG

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.

Morgan-Barrett-Headshot
| 7 min read
Anna Payne with a mask sitting in a hospital chair.

BLOG

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