Most adults with cystic fibrosis (CF) surveyed at a U.S. care center had never received genetic counseling, and many had unanswered questions about fertility, pregnancy, and family planning. Among more than 100 respondents, 71% had not received genetic counseling, and 27% had never heard of it. Fifty-four percent of…
Discussion
I’ve been in pain so long that I can’t remember a time when I didn’t feel pain in one part of my body or another. Through surgeries, procedures, medication side effects, and the injuries of everyday life, pain has been a constant companion for me and continues to affect my…
Discussion
Two drug developers are teaming up to advance toward clinical trials an inhaled treatment targeting the disease mechanisms underlying cystic fibrosis (CF). The U.S.-based Aptar Pharma and Aceso Therapeutics, headquartered in France, announced they will collaborate on developing ACT-101, an experimental RNA therapy. Unlike traditional drugs that target…
Discussion
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…
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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