My parents made sure that I enjoyed my childhood despite my health struggles with cystic fibrosis. They focused on making sacrifices and hard decisions, such as relocating to be near my clinic, and never letting me brood over my prognosis.
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The road to recovery after a lung transplant can be long and arduous. It took me awhile to appreciate all the benefits, but I am blessed with the ability to breathe and a new-found confidence that has emboldened me to try new things.
When my four children were young, it was important for my husband and me to protect their sense of security. We did what we could to reduce their fears about my frequent hospital visits and even make it fun for them at times.
I felt like I was living with a secret disease because I could never find answers to what was causing the lump of mucus in my throat or the frequent cough that would often embarrass me at school or with friends. Then, finally, I uncovered the secret when I was diagnosed with cystic fibrosis at age 20.
I have a son with cystic fibrosis, yet I feel like an imposter in the CF community because he is healthy while others are not. Is it right to ask for prayers and expect sympathy, when your child is not yet afflicted with the worst this disease has to offer?
My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.
The Foundation’s commitment to these principles will continue to be a cornerstone of the Foundation’s work to advance our mission in 2023.
Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
I was diagnosed with cystic fibrosis late; and the anger I felt was contagious for my son, who was dealing with his own diagnosis. But, I found support and am now focusing on the things in my life that I can control.
Funding will support preclinical research and early-stage clinical trials