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Parenting Tips

Lisa Greene is a writer, educator and mother of two children with CF. She and child psychiatrist Dr. Foster Cline wrote a book about parenting children with health issues. The book can be found here, and this is her website www.TipsForCFParents.com Below is an article about five crucial concepts that …

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Cystic Fibrosis symptoms: Asthma, Allergies & Green FAQ

Written by member Nightwriter Please note that this information was compiled from numerous threads on the message boards relating to cystic fibrosis symptoms such as Asthma and Allergies. We encourage you to search and read the threads for more detailed information, engage in your own research outside the message boards …

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Ten Hurdles to Cystic Fibrosis Patient Adherence

By Jeanne Barnett on Jun 4, 2012 (source: EyeforPharma Blog) There are many factors which can influence the level of patient adherence in any given treatment, Jeanne Barnett looks at how social platforms can provide the answers and presents her findings. You may already be aware of the great success …

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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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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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Enzyme FAQs

Newly Diagnosed/Infancy The doctors want me to give the enzymes to my baby in food but he’s only a week old? I thought we weren’t supposed to give solids that early. My baby nurses by grazing. When do I give more enzymes? I’m supposed to give ½ an enzyme. How …

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CF Patient To Climb the UK’s Three Highest Mountains in 24 Hours

Written by Leonor Mateus Ferreira Source: Cystic Fibrosis News Today Not long after his birth in 2013, Paul Siebenthal‘s son Noah was diagnosed with cystic fibrosis (CF) and the new father became aware that his son would struggle with a chronic, life-threatening disease for his entire life. However, Paul Siebenthal did not accept that …

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New cystic fibrosis drug has high potential, high cost

Written by Tracey Walker Source: Managed Healthcare Executive FDA’s approval of Vertex Pharmaceutical’s groundbreaking lumacaftor/ivacaftor (Orkambi) for cystic fibrosis (CF) is the first drug to treat the underlying cause of CF in people ages 12 and older with two copies of the F508del mutation. CF is an inherited chronic disease that affects …

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Lauren Brenneman – Hartford Hospital cystic fibrosis case study

CysticFibrosis.com welcomes Lauren Brenneman (LouLou) to the CysticFibrosis.com team. Lauren will help to carve out strategic paths as we move forward and serve the CF community. She will also be involved on many video productions we have planned in 2015. This is Lauren’s latest video and as you can see she …

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CF Innovators: Blown Away

An app aimed at helping younger people with cystic fibrosis stick to their exercise regime, and a cuddly bear to help children take control of their self-management were joint winners in a 24-hour Inclusive Design Challenge on Monday, which marked the launch of Sheffield Hallam University’s Design4Health conference. The challenge …

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