Advocates around the globe are gearing up for a variety of events and digital campaigns this week to kick off Cystic Fibrosis Awareness Month. From neon-lit bike rides in California to national walks across Canada, these May initiatives seek to fund life-saving research and…
Discussion
When my late daughter, Jasmine, who had cystic fibrosis, turned 10 in 2001, she had lived through a year of medical routines and hospitalizations. But there were also moments of unexpected joy. For her birthday, she wanted a unicorn cake, so we attempted to make one together. With our…
A small clinical trial testing Sionna Therapeutics‘ SION-719 as an add-on treatment for cystic fibrosis (CF) — to be used alongside the approved CF therapy Trikafta (elexacaftor/tezacaftor/ivacaftor) — has finished enrollment. The developer announced the milestone in a company press release, noting that top-line data from the…
People with cystic fibrosis (CF) taking Trikafta usually report notable improvements in their quality of life — even if they don’t show substantial gains in objective measures of lung function — soon after starting treatment with the approved oral medication. That’s according to a new real-world study, which…
Discussion
Counseling is as routine for me as eating. Being born with cystic fibrosis and receiving a double-lung transplant led to recurring mental health struggles, including anxiety and depression, which require continual management. Therapy is one of the tools I use to respond. I began my college years as a young,…
The use of combined hormonal contraceptives by women with cystic fibrosis (CF) who are not taking CFTR modulators increases by 53% the risk of developing CF-related diabetes (CFRD), a study in the U.S. found. Conversely, combined hormonal contraceptive “use was not associated with increased CFRD incidence among modulator…
Discussion
Every morning used to start the same way. My late daughter, Jasmine, would shuffle into the kitchen with wild-looking hair, rub the sleep from her eyes, and ask for applesauce with cinnamon. Before she could eat, though, she’d have to do her cystic fibrosis treatment regimen, which consisted of…
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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