Cystic Fibrosis Weekly Update

Contents:

Case Report Describes Unconventional Method for Delivering PERT in Premature CF Baby

Sep 16, 2020 07:00 am | Marisa Wexler MS

Adding pancreatic enzymes to “pre-digest” food was found to be an effective way to ensure nutrition in an infant with cystic fibrosis who was being fed through a feeding tube, according to a recent case report. The report, “Crushing pancreatic enzymes with enteral feeds in an extremely premature infant with cystic fibrosis—a novel and effective technique,” […]
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I’m Having Surgery (and Other Clickbait Headlines)

Sep 15, 2020 03:00 pm | Bailey Vincent

mask, body image, walk, pre-existing condition, perspective, slowing down

One of the hardest things to deal with in life are the “unknown knowns.” This is what happens when you’ve had one too many surgeries, or just enough hospital tuneups, and you have a hard time letting go of what you can’t control. I am trying to prepare for a surgery to my spine that […]
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Have Our Backs and Push Against Ableism With Us

Sep 15, 2020 09:00 am | Brad Dell

In 2013, miles above the Pacific, flight attendants and passengers stared silently as a man yelled — literally yelled — at me for coughing too much. In meltdown mode, he didn’t care for my explanations that I have a noncontagious lung disease, nor that cough suppressants make me sick. For an eternity he screamed that […]
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EMA Validates Application Seeking Expansion of Kaftrio Approval

Sep 15, 2020 07:00 am | Marisa Wexler MS

The European Medicines Agency (EMA) has validated an application that seeks to expand the approval of Kaftrio (ivacaftor/tezacaftor/elexacaftor) in combination with Kalydeco (ivacaftor) to treat cystic fibrosis (CF) in individuals 12 and older who have at least one copy of the F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene and other specific CFTR […]
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