My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.
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Raising three kids in daycare often involves runny noses and mystery stains. As a mom with CF, I’ve figured out how to balance our daily lives with keeping me healthy and daycare-germ free.
The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs. Catalyzed by the approval of Trikafta® and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.
The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation's model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
As a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.
Even though it was scary, I made attending medical appointments during the pandemic a priority.
Getting sick for a person with CF is so much more than a couple days off watching Netflix. It can be really scary. But you can help us stay healthy this cold and flu season.
Finding out I had COVID-19 was frightening, but much of what my brother and cystic fibrosis taught me about emotional resilience helped me get through it. This is the story of my journey surviving cystic fibrosis and COVID-19.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
Because of the threat to my health caused by COVID-19, I had to give up my dream job as a nurse practitioner. Now I am asking for paid leave expansion.