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Newly Diagnosed

Written by Aboveallislove Introduction Welcome to CysticFibrosis.com. If you are new to Cystic Fibrosis because you recently learned your unborn or newborn baby has, or may have, Cystic Fibrosis, please read on. We wrote this overview for you because we know, we really, really know, what you are going through. …

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Cystic Fibrosis testing: Genetic testing and sweat test

Written by LightNLife and Ambry Genetics updated by Melissa75   How many different CF mutations are there? More than 2000 and new ones being added all the time. http://www.genet.sickkids.on.ca/cftr/StatisticsPage.html What is meant by a “panel” test? A panel tests for a predefined number of mutations. It’s possible that a panel …

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A Conversation on Filing Taxes with Cystic Fibrosis

CF Tax Deductions Often people with Cystic Fibrosis and families with children with Cystic Fibrosis are not aware of the tax deductions they may be able to make to help offset the costs of the condition. Watch the videos and learn more….

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Cystic Fibrosis Resource and Information Needs Survey

Written by Melissa75 and Imogene In the Spring of 2015, we surveyed the CF community on resource and information needs. 478 people responded, answering questions about the resources for CF care they most believe could improve their CF care, and what topics they’re most interested in learning about. We’d like …

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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 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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