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A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis

Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still relevant today with patients in our cystic fibrosis community being very astute at learning, empathetic toward each other and courageous going forward with many new drugs for personalized medicine. Thanks to PharmaPhorum …

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Orkambi has simply changed my life…a Cystic Fibrosis reflection

A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat Cystic Fibrosis. This post was originally published on our forums by member RubyRoseLee. Two Years Ago “I’ll never forget the emotions I was feeling that morning. I had just gotten …

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Spirometry test at clinic

Digital Spirometry and the Cystic Fibrosis patient

For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can …

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social media feature pic jan 2017

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!

Hello, my name is Tamika Grubbs and I am a CF nurse consultant with over 4 years of experience. In the past, I served as an Adult CF coordinator for Central Florida Pulmonary Group, CF Clinical Regional Specialist and CF Manager for Kroger Specialty Pharmacy (formerly TLCRx Pharmacy). I am …

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social media feature pic jan 2017

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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charlesdarwinImogene

The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

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Image by Evgenios Metaxas MD MSc, Pulmonologist http://creativecommons.org/licenses/by-sa/3.0

Home Monitoring vs. Traditional Care in CF: Year-Long Study Results

A study of home monitoring vs. traditional cystic fibrosis care in 267 patients age fourteen and older showed that after a year, FEV1 decline is similar in both models, though exacerbations are detected earlier in the home monitoring group. Home monitoring consisted of twice weekly electronic logging of spirometry and …

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What is Cystic Fibrosis – Infographic

What is Cystic Fibrosis? View this handy infographic which explains, in a summarized format, what Cystic Fibrosis is, including symptoms, genetics, diagnosis and treatment. Feel free to share this infographic and at the bottom of the page, you will find a handy printable version of ‘What is Cystic Fibrosis’ (adapted to letter-sized …

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Amber’s Cystic Fibrosis Miracle

Introduction My name is Amber Newman and I’m twenty-five years old, soon to be twenty-six. I was diagnosed with CF when I was seven months old due to failure to thrive. I’ve been a member at CysticFibrosis.com since I was twelve years old. I’ve been able to connect with an …

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