hearing loss

Risk of Hearing Loss from IV Aminoglycosides in Cystic Fibrosis

Cumulative exposure to IV tobramycin and amikacin, which are critical for treating cystic fibrosis infections, increases the risk of hearing loss. A study, “The cumulative effects of intravenous antibiotic treatments on hearing in patients with cystic fibrosis,” published last month in the Journal of Cystic Fibrosis discusses how IV tobramycin, …

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Indrepta C

Indrepta C now available for nonsense mutations

Sharktank Research Foundation releases Indrepta C; a nutritional supplement targeted for nonsense mutations Sharktank Research Foundation announces promising news for CF patients with ‘X’ or nonsense mutations, which cause a premature stop codon. The CFTR nonsense mutation W1282X is shown to be activated by a natural dietary supplement, curcumin.1 Recently, …

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concert pills

Treatment for Cystic Fibrosis: Vertex Acquires Concert’s CFTR Potentiator CTP-656

Vertex Pharmaceuticals recently purchased the Phase 2 cystic fibrosis potentiator drug CTP-656 from Concert Pharmaceuticals. The deal is estimated to be worth $250 million dollars. CTP-656 is intended to be a longer-acting, once daily version of Vertex’s drug ivacaftor, which aims to restore CFTR function in treatment for Cystic Fibrosis. …

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pollution chimney-324561_640

Respiratory Health and Air Pollution

The impact of small particle air pollution on the lower airways (lungs) has long been studied, but now scientists have evidence of its negative impact on the upper sinonasal airways as well. The World Health Organization’s recommendation for small particle air pollution (PM2.5) is that it not exceed an average …

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pseudomonas2

Does Ivacaftor Affect Lung Bacteria in Cystic Fibrosis?

Ivacaftor has been shown to increase CFTR activity and lung function in people with Cystic Fibrosis and the G551D mutation, but until a recent study, scientists were not sure if ivacaftor changed the level of bacteria in the lungs. The results of a deeper study on ivacaftor have been published, …

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social media feature pic jan 2017

New on our Cystic Fibrosis Social Media (@knowcf)

We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are saying. February 2017   Facebook: Facebook.com/KnowCF Brian’s Genentech Pulmozyme Video: Click …

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Exercise

Research on CF and Exercise in Cystic Fibrosis treatment

Significant research, both recent and decades old, shows that exercise helps people with CF. Yet it’s not always a part of a person’s Cystic Fibrosis treatment regimen. Here are some facts that may convince you to exercise more with the the guidance and approval of your CF team. “Exercise can …

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PGCFT

Evolution of a New App for Cystic Fibrosis management

Behind The Scenes With A New App For Managing Your Cystic Fibrosis By Jeanne Barnett, founder of CysticFibrosis.com In my 21 years of operating CysticFibrosis.com and from reading over two million messages in our forums, I’ve learned that CF patients generate fascinating data that is valuable to other patients, caregivers, …

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heart fibrosis

Pulmozyme May Extend Lives of People Without Cystic Fibrosis

Pulmozyme might be able to extend the lives of people who don’t have CF according to a recent article in Science Daily, “Fighting age-related fibrosis to keep organs young.” Since it was approved by the FDA in 1993, Pulmozyme (dornase alpha or DNase) has been used by many people with …

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cftr2

New Guidelines for Cystic Fibrosis Diagnosis

New Guidelines for Cystic Fibrosis Diagnosis A group of 32 scientists from nine countries have updated the guidelines for Cystic Fibrosis diagnosis. They published an article last month in The Journal of Pediatrics and the synopsis can be found here in Science Daily. The scientists looked at data from people …

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