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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As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.
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As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
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Effective communication is the best way to establish a partnership in care. Here are five things I hope to share with my cystic fibrosis care team to help them better understand where I'm coming from and what I need to stay healthy.
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I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.
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For months, I was too scared to tell anyone that my new inhaled antibiotic wasn't working for me. But after opening up about it with my CF care team, I learned that being honest is the most important thing I can do when it comes to maintaining my daily care.
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As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
