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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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.
I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.
I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
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.
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.