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Living With CFResearchRespiratory DiseaseTreatments

CFTR Function and Cigarette Smoke

Scientists are looking at how the CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) potentiator, Ivacaftor, might be used in COPD, specifically chronic bronchitis. They found that cigarette smoking reduces CFTR activity in lung tissue, and that exposing the lung cells directly to a CFTR potentiator reverses this effect. While the vast …

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Clinical TrialsLiving With CFTreatments

Lumacaftor/Ivacaftor longer trial on Heterozygous F508del Cystic Fibrosis Patients

At the end of November, the results of a clinical trial of Lumacaftor/Ivacaftor, also known as Orkambi, in CF patients with one F508Del mutation were published in the Annals of the American Thoracic Society. A past trial for Orkambi in this type of CF patient (heterozygous F508del) lasted 28 days …

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photo of Staph bacteria from NIH (public domain)
Living With CFResearchRespiratory Disease

The Lung Microbiome and Dysbiosis

The “microbiome” is a hot topic in respiratory medicine, with researchers from diverse fields such as chronic obstructive pulmonary disease, bronchiectasis, pulmonary fibrosis, and lung transplantation seeking to use the newly accessible technology of bacterial ribosomal RNA sequencing and related technologies to characterize airway bacterial communities and to determine the …

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AdheranceLiving With CFTreatments

Redesigning Prescription Medication Inserts

Six everyday items were re-imagined by designers in this week’s New York Times Magazine. A data visualization firm, Periscopic, and Thomas Goetz of Iodine, a health information website, created a more informative and easier to understand prescription medication insert that can be viewed here (scroll down). The medication used to …

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Living With CFNews & EventsResearch

North American Cystic Fibrosis Conference 2016

The 30th annual North American Cystic Fibrosis Conference was this October in Orlando, FL and offered more more than 60 sessions on topics related to CF. It was attended by physicians, research scientists, nurses, respiratory and physical therapists, social workers and pharmacists and more. The summary from the session called, …

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AdheranceLiving With CFResearchTechnology

Bluetooth-enabled Tech Shows Promise for Adherence and Lung Health

A device to monitor inhaled antibiotic use by CF patients and transmit the information to doctors via Bluetooth technology resulted in improved adherence and lung function in a pilot study from Ventura County Medical Center in Ventura, California. Reported in a press release from the journal Chest this month: For …

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copper
Living With CFResearchRespiratory Disease

Copper in Hospitals to Limit Cross-Infection

Using copper on high-touch surfaces in hospitals may reduce Hospital-Acquired-Infections, according to a report published in the American Journal of Infection Control. The New York Times article describing this report says: …on average, fixtures in copper-equipped rooms had concentrations of bacteria about 98 percent lower than in rooms furnished with …

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Living With CFResearchRespiratory Disease

Distinguishing Relapse from Reinfection in MAC

In the News A study was published this month in the Annals of the American Thoracic Society (ATS) that looked at the differences between relapse of infection and a reinfection of the lungs by Mycobacterium avium complex (MAC). The study was not done with CF patients, however, the findings may …

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FinancialLiving With CFTreatments

How Much Do Orphan Drugs Cost?

The high cost of CFTR correctors and potentiators has been in the news since the drugs were approved by the FDA. Many people have been concerned that private insurers and the government might deny coverage based on the cost. However, recent research into healthcare spending indicates that the overall impact …

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ExerciseLiving With CF

13 year-old with CF a Top Surfer in South Carolina

A thirteen-year-old with CF, Bree Labiak, is a top surfer in South Carolina. She competes with and sometimes wins over surfers ten or more years older than her. Read more about her here http://www.postandcourier.com/20160905/160909853/13-year-old-with-cystic-fibrosis-is-one-of-the-top-female-surfers-in-sc From the article: Dr. Patrick Flume, director of the Medical University of South Carolina Cystic Fibrosis …

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