As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
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Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
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.
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.
Thinking of a food elimination diet? I tried one and learned some lessons along the way.
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.
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.
My husband and I tried everything to encourage weight gain in our young son to no avail; so we chose to get him a gastrostomy tube.
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.