newyorkerdecember62004
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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3dlivermedium
Living With CFNews & EventsTechnologyTransplants

UCSD’s 3D Printed Liver Cells Most Liver-like Yet

3 D Printed Liver Image from ccsmobile.co.uk Feb 9, 2016 Home to the original bioprinting firm, Organovo, San Diego is, apparently, a hotbed of bioprinting activity.  Or, at the very least, the University of California, San Diego is make its own strides in the field of bioprinted liver tissue.  Published …

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EnzymeFAQ
FAQsGastrointestinal DiseaseLiving With CFTreatments

Enzymes – Frequently Asked Questions

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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bubby's enzymes
Gastrointestinal DiseaseLiving With CFParentingTreatmentsVideo

Toddler Bubby, taking enzymes for Cystic Fibrosis treatment

80%-90% of people with Cystic Fibrosis need to take enzyme capsules before they eat, as part of their Cystic Fibrosis treatment. In Cystic Fibrosis, as the lungs produce thick, sticky mucus, the pancreas also makes the same type of mucus that blocks the release of enzymes needed for digestion. When …

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nutraceuticals
Alternative MedicineLiving With CFSurveyTreatments

Your Questions on Nutraceuticals

From our Survey in 2015 Qualitative Research: YOUR Questions   What are some natural treatments that are safe and effective to enhance regular treatments? Who will work with CF patients regarding natural remedies such as essential oils? What foods, natural remedies, or supplements have most helped patients slow the progression …

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adayinthelife
GeneticsLiving With CFRespiratory DiseaseTreatments

How cystic fibrosis promotes lung infections

From the NIH At a Glance Scientists discovered how cystic fibrosis raises the risk for lung infections. The findings also identify a novel potential therapeutic target. Cystic fibrosis is an inherited disorder that results in a buildup of thick and sticky mucus in the lungs, airways, and other organs. Excess …

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welobby
AdvocacyClinical Trials

We Lobby

A Brief History of Our Lobbying Efforts in 2015   In April, 2015, we sent this letter to the FDA Committee: Sent: Thursday, April 02, 2015 12:17 PM To: PADAC Subject: on line patient community at cysticfibrosis.com Dear Dr. Hong, We run an on line patient community at cysticfibrosis.com. Several …

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Hypertonic Saline
FAQsLiving With CFResourcesTreatments

Cystic Fibrosis treatment: Hypertonic Saline Questions

These question were posed by CysticFibrosis.com and answered by: Michael McPeck, RRT Respiratory Therapist   What is hypertonic saline (HTS)? HTS is sterile water into which common salt (sodium chloride, NaCl) has been dissolved.  The degree of salinity, or salt concentration must be greater than 0.9% in order to be …

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