A smoking cessation program designed specifically for families of children with cystic fibrosis (CF) helped caregivers better understand the harms of smoke exposure, feel more confident about quitting, and reduce their cigarette use, according to a new study. The initiative, called Clinical Effort Against Smoke Exposure in Cystic Fibrosis (CEASE-CF),…
Discussion
My relationship with sleep has always been complicated. Sometimes I wait until the very end of the day, when I’m so exhausted that I just collapse into bed. Other times, I toss and turn, adjust my position 35 times, and eventually fall asleep a few hours later. I’m also prone…
The European Medicines Agency (EMA) has awarded the early priority medicines designation, known as e-PRIME, to SPL84, an experimental inhalation therapy designed to treat cystic fibrosis (CF) caused by a specific mutation called 3849+10 kb C-to-T. The EMA grants e-PRIME to investigational medicines that target an unmet medical…
Discussion
Note: This column describes the author’s own experiences with Trikafta (elexacaftor/tezacaftor/ivacaftor) and Orkambi (ivacaftor/lumacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last Friday, I attended a Rare Disease Day event hosted by the National Institutes of Health (NIH)…
Discussion
I lost my daughter, Jasmine, to cystic fibrosis (CF) at age 27, but we battled and lived with this rare genetic disease since before she turned 2 years old. In 1998, when Jasmine was 6, our mornings always started early. The kitchen was never quiet for long — it…
One year of treatment with Trikafta modestly eased some digestive symptoms and led to fewer reports of constipation in children with cystic fibrosis (CF), although those were already low before the triple-combination therapy, a new study reports. It also increased the proportion of patients with normal levels of fecal…
Discussion
Five and a half years ago, I woke up from a double-lung transplant breathing as I hadn’t been able to in decades. Not just the volume or ease of it, but the absence of the fight that I’d become used to with cystic fibrosis (CF). The lungs just worked.
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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