Last week, my parents joined hundreds of advocates on Capitol Hill in Washington, D.C. Along with others who have loved ones with cystic fibrosis (CF), they met with the staffers of senators and representatives from Kentucky. While there, my parents explained what CF is and all the medications…
Kidney stones are commonly detected in children with cystic fibrosis (CF), but are often small and do not require surgical treatment, according to a new study from Turkey. Nearly a fifth of the children evaluated in the study had kidney stones detectable by ultrasound, and even more had evidence…
Discussion
When my late daughter, Jasmine, was 8 years old, she never wanted to miss a party. Even when her lungs felt heavy and her breath was short, she’d insist on putting on a T-shirt and jeans, ready for any adventure that awaited her. She loved birthday parties most of all…
People with cystic fibrosis-related diabetes (CFRD) show alterations in the lung microbiome, the community of microbes that live in the lungs, a study from Sweden found. These alterations are characterized by reduced diversity of bacterial types and more imbalanced bacterial composition. The study also demonstrated that patients with CFRD had…
Discussion
At 54, I’ve lived with cystic fibrosis (CF) all my life. Five years ago, I survived a double-lung transplant. Along the way, I’ve managed CF-related diabetes (CFRD) and spent nearly two decades facing stage 3 chronic kidney disease. I’ve lost one kidney and rely on the remaining one. It…
Low- and ultra-low-dose lung CT scans may help monitor how people with cystic fibrosis (CF) respond to CFTR modulator therapies while using less radiation, a study in Italy suggests. After starting Trikafta (ivacaftor, tezacaftor, and elexacaftor), patients showed a nearly 50% reduction in airway thickening and a…
Discussion
We typically celebrate an anniversary, but when you live with a chronic health condition like cystic fibrosis (CF), your relationship to certain days on the calendar can be a bit more complicated. They may not be milestones to celebrate, but they can still serve as reminders. I’m thinking…
Becoming educated and informed about cystic fibrosis is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your CF journey.
There is no cure for CF yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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