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Living With CFResearchSupport

The Importance of Treating Depression in People with Cystic Fibrosis

Depression can be a difficult subject to talk about, but it is important to be aware of the increased prevalence of depression in people with cystic fibrosis and other chronic health conditions, and to try to understand how depression, physical health, and general well-being are interrelated. In 2007, five doctors and …

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ExerciseLiving With CFResearch

Cystic Fibrosis: Three pilates exercises that may increase breathing strength

People with Cystic Fibrosis often suffer from air trapping and hyperinflation of their lungs. Air trapping is an abnormal retention of air. It can occur because the lungs lose elasticity and air doesn’t escape, and because mucus and inflammation obstruct exhalation. The trapped air can then cause the lungs to …

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Living With CFNews & EventsResearch

Surprising Benefits from CF Research

CF Research May Help Agriculture Cystic Fibrosis is often referred to as an orphan disease i.e. research benefits a relatively small portion of the general population. But here is a serendipitous situation in which CF research may help agriculture on a large scale. A graduate student at the University of …

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AdheranceLiving With CFResearch

Dr. Warren Warwick, The Bell Curve

The Bell Curve Dr. Warwick has made a study of what it takes to do better than everyone else.  He will be missed by the CF Community! What happens when patients find out how good their doctors really are? BY ATUL GAWANDE Every illness is a story, and Annie Page’s …

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Alternative Medicinefeatured_memberLiving With CFResearch

Sharktank: Jim Caldwell

My name is Jim Caldwell and I would like to introduce myself to this group. I am the president of another cystic fibrosis group called Sharktank Research Foundation (sharktank.org). I’ve been involved with Sharktank since 1999. I began studying cystic fibrosis seventeen years ago through Sharktank, shortly after my daughter was …

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GeneticsLiving With CFResearchTreatments

Trial results of Ivacaftor in Cystic Fibrosis children ages 2-5

Results are out from a two part study involving children ages 2-5 with at least one gating mutation trying Ivacaftor (a medication used in Cystic Fibrosis treatment) From the Lancet Respiratory Journal, 20 January 2016 Ivacaftor has been shown to be a safe, effective treatment for cystic fibrosis in patients …

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GeneticsLiving With CFResearchVideo

Genome editing with CRISPR-Cas9

This video explains how research in genome editing may help treat genetic diseases like CF in the future.

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Living With CFResearchTechnology

Personal Spirometry and the Cystic Fibrosis Patient

Written by Jeanne Barnett As a moderator/founder of a vibrant online social health community: cysticfibrosis.com, I can attest to hundreds of messages in which cystic fibrosis e-patients discuss their PFTs (pulmonary function tests). Members are so in tune with these numbers, they often add them to their signatures along with …

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GeneticsLiving With CFResearch

Cystic Fibrosis genetics: Know Your CF Mutations

Source: CFF.org For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly important to know your mutations so you …

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Living With CFResearchRespiratory DiseaseTreatments

Concert Pharma’s Modified Version of Cystic Fibrosis Therapy Ivacaftor Outperforms Kalydeco in Early Testing

Written by Patricia Inacio, PhD Source: Cystic Fibrosis News Today Concert Pharma recently announced successful results from a Phase 1 single ascending dose clinical trial for their lead investigational drug CTP-656 as a therapy for cystic fibrosis. Cystic fibrosis is a life-threatening disease characterized by a progressive lung function decline and is caused …

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