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.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.
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To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
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Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.
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My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.
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I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
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After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.
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Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.