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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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.
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As a person with cystic fibrosis, I struggled all my life to gain weight, despite eating a high-calorie, high-fat diet. Once I started Trikafta® and my weight increased to normal levels, I had to learn a new, healthier way to eat.
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My son has had a problem with eating ever since he was born prematurely and diagnosed with cystic fibrosis. After a lot of stress and anxiety about reaching his weight goals, we finally enlisted an occupational therapist, who helped him learn to love eating.
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Although your teenage years can be difficult, they ultimately help mold you into the person you are meant to be -- especially when you have a chronic disease, like cystic fibrosis.
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After my lung transplant, I discovered I couldn't keep eating the typical high-calorie CF diet. By learning to practice mindful eating, I have found a new way to enjoy my food.
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I've written about how tough a decision it was to get my son, Major, a gastrostomy tube. I also wrote about the benefits it has provided. Here's what the process taught me.