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.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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Before we knew what to call it, cystic fibrosis had inflicted damage on the lives of my sons and me and left fear in its wake. Three years after my sons' late diagnoses, knowledge has calmed the storm and provided a measure of peace.
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When my wife and I found out that our daughter had cystic fibrosis, we decided to start maintaining a daily schedule for her CF treatment and care. Here are five ways that we uphold this routine and encourage our little girl to take an active role in her own care.
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As the mother of two girls with cystic fibrosis, the time-consuming routine can wear down on you and cause frustration. Although CF can be challenging, it's important that I keep my attitude toward the disease in check because I know it will ultimately shape how my kids approach their lives with CF.
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Sending your child to kindergarten for the first time is hard enough, but when your child has cystic fibrosis, it is even harder. Here's how I handled my daughter's transition to kindergarten and the lessons I learned along the way.
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As the single parent of a child with cystic fibrosis, life is a difficult balancing act. That's why, sometimes, I feel a bit like Jean-Claude Van Damme.
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As a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.