Trikafta (elexacaftor/tezacaftor/ivacaftor) is generally effective at easing sinus issues in people with cystic fibrosis (CF) who have already undergone a lung transplant, but more research is needed to evaluate whether it can improve nutritional status or lung function in transplant recipients, according to a new analysis. Researchers also…
Discussion
First in a series. There is no cure for cystic fibrosis (CF). This is not a controversial statement. It is not debated in the medical literature or disputed in transplant centers. Everyone in this community knows it in their bones. I say that literally, as CF-related bone disease…
Discussion
Nearly eight years ago, I flew to Salt Lake City for the Transplant Games of America (TGA). It was one of the best decisions I’ve ever made. Life-changing, in fact. It had been almost a year since my double-lung transplant due to cystic fibrosis (CF). That first year…
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…
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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