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Thread: Report from Europe: Ivacaftor Real World Results

  1. #1
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    Report from Europe: Ivacaftor Real World Results


  2. #2
    Super Moderator
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    Dec 2011
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    Thanks for the update information. Certain things like chronic inflammation of the intestines of a CFer aren't often mentioned by medical researchers and doctors yet they are a huge issue with many. It is almost as though the conditions are so obvious that they don't bear mentioning them.

    Any improvement in the gut using Ivafactor has been anecdotal evidence. This study shows the restoration of normal probiotics in the gut though the tissue inflammation remains. It indicates a possible improvement in the body's natural immunity.

    Great news!
    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

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