As someone who does not benefit from any CFTR modulators, I only have one option for improving my lung function — transplant. But just because it’s my only choice does not mean it’s an easy one to ...
When my son was diagnosed with cystic fibrosis, I was taught everything I needed to know about CF…except how to navigate the anxiety he experiences. As he’s gotten older, I’ve struggled to know how to ...
Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease. 12 min read What Is Cystic Fibrosis? Cystic ...
With advancements in cystic fibrosis treatments, individuals with the condition are now living longer and healthier lives, often well into adulthood. This progress has opened the door for many to ...
If the transplant committee thinks transplant surgery would be harmful to you, ask your transplant team about what options you have. It is possible that you will need to receive treatment for a ...
Receiving a late diagnosis of cystic fibrosis meant I spent my childhood and young adulthood being told that how I was feeling — both physically and emotionally — was wrong, and that I was “young” and ...
Your transplant team and CF care team can help you think about whether to get listed. Knowing the risks and benefits can help you decide when to get listed. It also helps to understand the factors ...
Throughout my childhood, I was thin and underweight thanks to cystic fibrosis. When my mother, my sister, and I would go to the trails near our house to exercise, I hated running. I could barely make ...
Growing up with CF, I always felt like my life was a ticking time bomb. Growing up, I didn’t really think about my own mortality and my life span; that all changed when I turned 18. I vividly remember ...
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