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The third plenary at this year’s North American Cystic Fibrosis Conference focused on the changing needs of the CF population that are compelling an evolution in CF care. As a person with CF, this evolution in care directly affects me as I face the challenges of living longer with this disease.
Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me.
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.
Now that I’m in my 40s and post-lung transplant, I’m beginning to embrace the realities of aging with cystic fibrosis. Despite the gray hairs and deepening wrinkles, I know that I am lucky to be looking forward to mammograms and menopause.
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.
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.