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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I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.
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.
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.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
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.
When I went off to college it was up to me to manage my cystic fibrosis for the first time without help from my family. I felt fine after skipping my medications and decided to stop using my noisy vest because it embarrassed me, and I wanted to make friends at my new school. As a result, I stayed in the hospital for a few weeks and left with a new perspective on life.
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.
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.
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.