By the time my late daughter, Jasmine, turned 17, our days had settled into a kind of uneasy peace. The routines that helped us manage her cystic fibrosis (CF) had become second nature. Every morning began with the bronchial drainage machine thumping away in the living room as…
Discussion
Children and adolescents with cystic fibrosis (CF) continue to experience mental health and behavioral concerns despite treatment with Trikafta (elexacaftor/tezacaftor/ivacaftor), according to a recent study. Caregiver anxiety and depression were also found to be associated with mental health and behavioral symptoms in their children, highlighting the importance of…
Discussion
I took part in physical therapy (PT) on a weekly basis to build my strength during the lead-up to my double-lung transplant nine years ago. PT was mandatory to complete the prerequisite requirements to be listed for a transplant, but I learned so much about myself in ways that…
Discussion
Higher than normal levels of several pH-regulating proteins can be found in the bronchial, or airway, cells of people with cystic fibrosis (CF), according to a new study. This suggests the body may be compensating for the loss of CFTR function — which helps regulate the movement of salt…
Discussion
Life at home never really went back to normal after Jasmine’s last hospital stay. She was 16 and wise beyond her years in ways that only kids who’ve spent too much time in hospitals can be. Every day was a balancing act for me, between being her parent and being…
Discussion
An experimental RNA-based approach restored production and function of CFTR — the protein that is faulty or missing in cystic fibrosis (CF) — in preclinical models carrying disease-causing nonsense mutations, a study shows. These mutations introduce an incorrect stop signal in the genetic instructions for making CFTR, causing cells…
Discussion
Bacterial extracellular vesicles (bEVs) — tiny sacs released by bacteria containing pro-inflammatory molecules — have been found at elevated levels in the bloodstream of people with cystic fibrosis (CF), particularly in those whose lungs are infected with the bacterium Pseudomonas aeruginosa. In the pilot study, the researchers call…
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.
Get regular updates to your inbox.
