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.
Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
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I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
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There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
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At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
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My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.
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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.
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I love being outside during the summer, but I make sure I have plenty of fluids and sunscreen around. Here are my top five tips to stay active and healthy this summer.
