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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Kailey holding her child while he is doing his treatments with her daughter sitting next to her leaning on her shoulder.


Adapting to Life as a Parent of a Child With CF

Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.

Kailey Prichard
| 5 min read
Breanne with her husband and son.


A Case of Imposter Syndrome in the CF Community

I have a son with cystic fibrosis, yet I feel like an imposter in the CF community because he is healthy while others are not. Is it right to ask for prayers and expect sympathy, when your child is not yet afflicted with the worst this disease has to offer?

Breanne Dalton
| 5 min read
Dana smiling sitting on her front steps with her husband and three children.


Giving Myself Grace

Just like there isn’t always a right (or one) answer to parenting, parenting two kids with CF has shown me that I need to just do the best I can for my family as we navigate my family’s constantly changing needs.

Dana Kibbel headshot
| 5 min read
Aidan holding up a peace sign outside of his college building.


Why I Had to Take a Break From Fundraising to Maintain My Son’s Privacy

I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.

Megan Neville
| 5 min read
Desiree smiling while holding a puppy.


How Hospice Helped Me Through My Daughter’s Passing

Hospice care helped my daughter, Desirée, through her final days.

Deborah Contreras
| 5 min read
Lathronia and her son at a restaurant.


My Advice to Other Parents of Color About Their Child With CF

My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.

| 5 min read