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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.

More community posts
Lindsey Cissell hugging her daughter at the beach.

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Educating Others About CF to Protect Our Daughter

We knew nothing about cystic fibrosis when my first daughter was born with the disease. We quickly became experts and took on the responsibility of educating our friends and family about what our daughter needed to stay healthy and thrive.

Lindsey Cissell headshot.
Lindsey Cissell
| 5 min read
Abby with her husband and daughter smiling sitting in seats at a baseball stadium.

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How I Learned to Let Go as a Parent of a Child With CF

As my daughter became a teenager, it was difficult for me at first to let her manage the responsibilities of her cystic fibrosis care on her own. It took going to see a therapist for me to wrap my head around the fact that it wasn’t my place to nag her about doing her treatments anymore. 

Abby Alten Schwartz headshot.
Abby Alten Schwartz
| 6 min read
Handwritten sign from a child thanking doctors for their research for COVID-19.

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Children With CF and COVID-19

As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.

Lael Yonker headshot
Lael Yonker, MD
| 5 min read
Kelsey Scott selfie with baby outside

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How Finding Other Mothers to Share the Good and Bad of CF Helped Me

Being a parent to a child with cystic fibrosis is hard. You need to hear from someone else in your shoes that it’s OK to grieve for the life you thought you were going to have with your child.

Kelsey Scott Headshot
Kelsey Scott
| 7 min read
Stacy Allen Evan Doctor Selfie

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Feedback to My Son’s CF Care Team: Together, We Make It Better

As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.

Stacy-Allen-Headshot
Stacy Allen
| 5 min read
Trista Escobedo Baby Blanket

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Making Tough Decisions To Keep Our Daughter Safe

Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.

Trista Escobedo Headshot
Trista Escobedo
| 9 min read