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The Wait For My Son’s Trikafta

By Misty Roussa March 26, 2020

I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don’t want him to have any setbacks.

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  1. Dealing With Body Issues as a Teen With CF

    By Gabrielle Hagen August 29, 2018

    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.

  2. Changing How I Eat Post-Transplant

    By Jenavese Armstrong August 7, 2018

    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.

  3. Food for Thought: Lessons From My Son’s Road to a G-Tube

    By Jaclyn Strube June 21, 2018

    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.

  4. I'm Not Lucky to Have Difficulty Gaining Weight

    By Bradley Dell June 19, 2018

    People often envied my skinniness, but they didn’t realize that CF made it difficult for me to want to eat -- or to get enough nutrients from -- the food that I did.

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  5. How I Went Vegan With CF

    By Ali Brown June 7, 2018

    After my grandmother’s health improved on a plant-based diet, I decided to try it for myself with the help of my cystic fibrosis care team dietitian. Not only are my lung function and energy better, but my weight is stable too.

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  6. How a G-Tube Unlocked My Son’s Potential

    By Jaclyn Strube March 22, 2018

    After deciding to get a gastrostomy tube for our son, my husband and I made sure he was prepared for the procedure. What we weren’t prepared for was the difference it made in his health, energy levels, and personality.
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