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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One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
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My daughter, Desi, recently started school. Here's what we did to prepare her to manage her cystic fibrosis and navigate the COVID-19 pandemic -- and what we learned in the process.
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The pandemic made me a homeschool teacher last spring. After deciding we would continue homeschooling our kids this fall, we agreed we needed to shake things up. Gone was the cluttered kitchen table where we were doing lessons before, and in its place is a “classroom” we made in our garage.
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My school gave students a choice of how they want to go back to school: virtually or in person. After considering what made sense for my CF, learning style, and mental health, I decided to attend school in person.
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Abandoning precautions to return to “normal” will put the health of people who may be at high risk for serious illness from COVID-19 in danger.
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When my university first shut down in March because of COVID-19, I thought our quarantine would be temporary. Now I am contemplating a fully online fall semester. I'm calling on all colleges to continue to accommodate the needs of their high-risk students.
