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Thread: Delta 508 & C2657+2_2657+3INSA

  1. #11
    Junior Member
    Join Date
    Jun 2019
    Posts
    2
    Hey everyone, I posted on this thread initially in 2015 under a different account but got locked out! So I'm back!

    I wanted to post just to find some general updates from those of you who deal with F508del and 2789+2insA.

    My daughter is now almost 5 years old, and has still shown zero symptoms of CF, which we praise God for.

    Our doctors really want us to keep doing the "preventative" treatments and have moved us into pulmozyne treatments each day.

    How are the rest of you doing? Any concerns?

    Thanks,

    Derek

  2. #12
    Super Moderator
    Join Date
    Apr 2006
    Posts
    20,952
    Welcome back! Glad to hear your daughter is doing so well and that you're being proactive with treatments! CF can be such a sneaky, progressive disease, so it's important to stay on top of things. I imagine she'll be starting school soon!
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #13
    Junior Member
    Join Date
    Mar 2015
    Posts
    2
    Hi, Our grandson has same combo. He is 11 now and has also shown no symptoms. Had a CT scan beginning of year which showed absolutely normal lungs. No damage. Has never used pulmozyne but does his breathing exercises. FEV1 consistently above 100%.
    Thus far any respiratory viruses have been of mild severity and short duration. Fingers crossed this will continue.
    Of course although very pleased with his progress, his doctors still advise caution. Fair enough.
    Glad to hear your daughter is doing well and hopefully will continue to do so. Cheers.

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