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Feb

CFFC Facebook Posts – February 2020 – Part 1

02/01/2020Learning That CF Isn’t My Fault – This blog is an example about how complicated sustaining mental health can be.

02/02/2020S. pseudopneumoniae Bacteria Can Cause Pulmonary Exacerbations in CF Patients, Study Finds – You don’t really need additional problems to worry about, but identifying a problem is the first step toward solving it.

02/03/2020The Harvest: Transitioning to life with Trikafta – We don’t want to be repetitive, but it’s likely that you can’t get too many Trikafta stories.

02/04/2020Day 4 – Trikafta Power – Yes, another Trikafta post, but this one is special. It’s observations shared by CFFC past-president Kori Tolbert Doherty!

02/05/2020CF Roundtable – Winter 2020 – The latest edition of CF Roundtable focuses on insurance issues.

02/06/2020Chronic Pain, Depression, and Anxiety in the CF Community – A thoughtful discussion about a subject that needs thoughtful discussion.

02/07/2020Research blast on gene editing – In their unique way, UK’s Cystic Fibrosis Trust provides a primer on gene editing.

02/08/2020My (Almost) Liberation from Recurrent Cystic Fibrosis Clinic Visits – While this starts out like another Trikafta success story, this blog post from Gunnar Esiason takes a thoughtful look at the dual purposes of clinic visits.

02/09/2020Research Sets Out to Identify Mechanisms of Dormant, Antibiotic-resistant Bacteria – This research may find the answer to recurring exacerbations.

02/11/2020Poor Gut Microbiota in Infants with CF Linked to Stunted Growth in 1st Year of Life, Study Suggests – The information in the headline may seem obvious, but it is helpful when science adds the “why” to the story, especially when the science also produces corrective action.

02/12/2020I Was Told I Would Only Need My Feeding Tube for a Few Years. It’s Been 9. What Happened? – Some good insights from Gunnar Esiason for those using or considering a feeding tube.

02/13/2020Orkambi Therapy Reduces Hepatic Steatosis in CF Patients, Study Shows – While Trikafta has become the star CFTR modulator, Orkambi has been around longer which has permitted research on affects beyond the lungs.

02/14/2020How Patient Surveys Made Our Care Team More Sensitive to a Single Voice – Although this blog focuses on the Patient and Family Experience of Care Survey, it’s clear that the willingness to communicate by both the care teams and patients is the key to success.

02/15/2020Iron Deficiency Common Among CF Patients and Requires Routine Screening and Guidelines, Study Suggests – This study demonstrates the broad spectrum of effects CF has on body chemistry and the need for comprehensive analysis in determining CF care.


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