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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We've only lived with our daughter Louisa's CF diagnosis for six months. Besides adjusting to her treatments and care needs, our priority has also been to talk openly about this new normal with Louisa's older brother -- in ways a 3-year-old can understand.
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When my husband got COVID-19, we had to set up strict rules and procedures to keep our adult daughter, who has cystic fibrosis, safe.
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For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.
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When faced with her daughter's diagnosis, Linda Dolan used Emotional Freeing Techniques to help her deal with the uncertainty of cystic fibrosis.
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For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.
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I want my daughter to be prepared for the world when she grows up, and that includes taking charge of her CF. She is only 4 years old, but it's never too early to get her ready to take on her CF care by herself.
