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AdheranceLiving With CFResearchTechnology

Bluetooth-enabled tech shows promise for adherence in Cystic Fibrosis treatment

A device that monitors inhaled antibiotic use in Cystic Fibrosis treatment, and transmits 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: …

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Living With CFResearchRespiratory Disease

Copper in Hospitals to Limit Cross-Infection

The use of copper in hospital rooms, may reduce cross-infection, a common concern in cystic fibrosis centers. 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, …

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mac
Living With CFResearchRespiratory Disease

Distinguishing Relapse from Reinfection in MAC

MAC is a non-tuberculosis mycobacterium (NTM). It is found everywhere in the environment, and since the 1990s has been increasingly found in people with Cystic Fibrosis. In the News A study was published this month in the Annals of the American Thoracic Society (ATS) that looked at the differences between …

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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 Cystic Fibrosis is 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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2016-08-31 18.55.51
Living With CFRespiratory DiseaseTechnology

A New Tool for Cystic Fibrosis Lung Monitoring

Ultrashort Echo-Time MRI has been shown in a recent study, published last week in the Annals of the American Thoracic Society, to be comparable to computerized tomography (CT scanning) in measuring CF lung disease. This is excellent news as it offers a tool that is precise and detailed like CT, …

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FAQsLiving With CFResourcesTransplants

Organ Donation – Surprising Facts

Cystic Fibrosis patients make up 12 percent of the waiting list for lungs. New York State changed the legal age of consent for organ donation from 18 to 16 years old to improve number of donors. Read more below: Last week, New York State changed the legal age of consent …

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Contestsfeatured_memberLiving With CFNutrition

First Winner! Probiotic/Prebiotic Recipe Contest (Cystic Fibrosis diet)

This recipe and picture were submitted by cysticfibrosis.com member haimapatel. She is the first winner of the Probiotic/Prebiotic Recipe Contest and will receive a $50 Amazon gift card. The recipe looks easy to follow and delicious! Please give it a try. You can thank her and ask her questions in …

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Clinical TrialsLiving With CFResearchTechnology

Drug Development Pipeline for Cystic Fibrosis treatment

The CFF has a interesting and easy to use Drug Development Pipeline webpage which shows the stages of medication that is being developed for Cystic Fibrosis treatment. The stage of development of each medication is clearly indicated and the medications are divided into categories of therapeutic approach. The categories are: Restore CFTR …

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Living With CFNews & EventsResearchRespiratory Disease

Barnyard Dust and Preventing Asthma in Children (one of many Cystic Fibrosis symptoms)

People with cystic fibrosis have infection and inflammation in their lungs, and some also have problems with asthma, making asthma one of the many cystic fibrosis symptoms that patients experience. From the CDC: the prevalence of asthma in the general population of the U.S. is 7-9%, and as many as …

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