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Cystinuria

  • 09-09-2018 12:42pm
    #1
    angeldelight
    Registered Users, Registered Users 2 Posts: 5,175 ✭✭✭


    Anyone here been diagnosed with this delightful condition? Our three year old daughter has and looking to see if we can find any others based in Ireland as all support groups I’ve found tend to be US based


Comments

  • #2
    OffalyPuzzled
    Registered Users, Registered Users 2 Posts: 129 ✭✭OffalyPuzzled


    Hi there,
    I have two kids with it (ages 15 & 11) diagnosed in the past year.
    I don't know of any support groups in Ireland but I find there's a lot of useful information here (US, I know but there are Irish people in the group): https://www.facebook.com/groups/cystinuria/

    As your post is 1.5 years old, I presume you've found out all about this "delightful" condition :-)
    There's certainly lots of information online from Guys Hosp in London and Goldfarb et al in NYC.
    Not so much here in Ireland, unfortunately.
    If you know of any centre of excellence on this condition here, I'd love to hear about it.


  • #3
    angeldelight
    Registered Users, Registered Users 2 Posts: 5,175 ✭✭✭angeldelight


    No nothing Irish-based unfortunately. Feel like I’m tempting fate saying it but since her first stone she hasn’t had any more yet thankfully. Hope your two aren’t suffering too badly


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