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Thread: DF508 and ??

  1. #11
    Just to update this post...my daughter is displaying more symptoms digestively than before. I am frustrated because her bowel symptoms match her deceased brother but yet no doctor will say yes or no. I just need answers. Ideas?

    jana

  2. #12
    I would suggest that you Google Steven D. Freedman, MD, PhD. He is at the Beth Israel Deaconess Medical Center in Boston. In his practice there he only sees adults but he does see children one day a month at the Boston Children's Hospital.

    It is my opinion that there is nobody better dealing with the subject of digestive issues, with CF Patients, than Steve. I would caution you that, digestive issues in CF Patients COULD lead to Pancreatitis and complete pancreatic insufficency..

    Bill
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  3. #13
    My Grandson has Delta F508 and C16796>A (R560K) and 1706A>G (Y569C) He is pancreatic insufficient, has chronic infections, hip dysplasia, etc. My daughter and I are still unclear what it means when you have 3!
    Carol Lynn, grandmother to Jaden born 1/23/2008 dx 3/10/2010 w/ Delta F508, R560K and Y569C, pancreatic insufficient.

  4. #14
    I think there were a couple individuals who've had three mutations. Hopefully your grandson is going to an accredited cf clinic and is being treated accordingly for those symptoms.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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