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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When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.
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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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Once I started Trikafta®, I became healthy enough to go to culinary school and become a chef.
By learning how to cook diverse cuisines, I improved the quality of my own meals, ate more, and have been able to maintain my weight.
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My daughter was born with cystic fibrosis and with an aversion to food. Teaching her to enjoy meals has been crucial to helping her grow and stay healthy.
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Cooking for a family of three -- one of us with CF and all of us having different diets -- makes mealtime complicated. It's taken some time, but I finally found the key to satisfying our whole family's needs at dinnertime.
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Food insecurity is a widespread problem that also touches the cystic fibrosis community. I should know -- I have experienced it myself and had to accept government assistance to buy food.