Viewing 15 posts - 1 through 15 (of 18 total)
  • Author
    Posts
  • #6348
    Avatar of Laohan
    Dr_ Duckers
    Member

    I thought I’d make this forum for people to talk to other people with PKU……..

    #6352
    Avatar of Breanna
    BreaMarie91
    Member

    I’m happy to talk with anybody anytime you want!!! That is if I’m on the computer nBreanna 16 CPKU

    #6356
    Avatar of Laohan
    Dr_ Duckers
    Member

    Yeah! nWe gotta find a way to get like ALL the Pku-ers on this site. nTHAT would be coooool…

    #6362
    Avatar of Breanna
    BreaMarie91
    Member

    Yeah we do! When I first joined it was pretty active here…I could defintally tell my friends about it here. I know atleast five girls with PKU who I talk to on the computer and then atleast ten more I meet from camp…only problem for you is that you would be surrounded by girls . And I’m not sure how many of them would actually join and come here seeing as we talk through things like myspace and facebook.

    #6389
    Avatar of anne
    annepku
    Member

    hi name is anne i will talk to anyone when my computer is on. It is good that there is a site you can go on and chat to someone else that has pku and share your stories

    #7179
    Avatar of Sarah
    oldkpugirl
    Member

    Hi everyone. My name is Sarah and I am 40 with PKU. I was diagnosed at birth with PKU. I would love to chat with anyone older, younger, people going back on diet after being off for a while, parents of children with PKU, or anyone who just wants to chat about PKU.

    #7192
    Avatar of Anna
    dntmswtmama
    Member

    Hi I just found out about this site. I have an almost 6 year old daughter who has PKU. We live in Hawaii and there are only a handful of patients here(less than 5 I think) we don’t have a lot of support. I am looking for a pen pal for her. She is starting to ask alot of questions about being different from her sister and dad and I. It would be nice for her to talk to someone with PKU. Thank YOu

    #7193
    Avatar of Breanna
    BreaMarie91
    Member

    My little sister Erica is 9 and she has PKU. I’m sure she’d be more then happy to chat with your daughter (through my email, since she doesn’t have one). nJust let me know if you want to do this and I can give you my email address. Are you on the PKU listserv? That’s a great way to meet others with PKU. nBreanna 16 CPKU

    #7202
    Avatar of Tara
    tara21379
    Member

    What is the PKU listserve? I have never heard of it.

    #7205
    Avatar of Breanna
    BreaMarie91
    Member

    If you go to http://www.listserv.emory.edu/archives/pku-support-l.html you can join the listserv. Basically it’s an email group. You send an email to the listserv email address and it gets send out to the thousands of people who are on the list and then they can reply back to you.

    #7228
    Avatar of Amber
    cjqa2007
    Member

    Just dropping in to say hi. My son is 5 with pku. We are currently in Tennessee but we are a military family so we have lived in a couple places.

    #7235
    Avatar of Missy
    MissyB2275
    Participant

    Hey everyone. I’m Missy. I joined this site a long time ago but forgot about it and now I’m back. I am 33 CPKU and have a little girl who is 10 1/2 months old and happy and very healthy. I’ve never been off of diet and never will go off unless they come up with a sure fire cure. Hope to get to know all of you.

    #7236
    Avatar of Jonathan
    gotpkuclub
    Member

    my name is Jonathan and I’m wondering if anyone would like to participate in an interactive club I have started.

    #7237
    Avatar of Jonathan
    gotpkuclub
    Member

    My name is Jonathan and I’m looking for people to join an interactive club called GOT PKU? CLUB
    we offer things like
    mentoring
    trips
    educating the public
    improving food selections
    fundraising
    and much more

    if your interested please contact me.

    #7269
    Avatar of heather
    myangel07
    Member

    Hi My name is Heather and my Daughter is Brianne we found out she had pku when she had the new born screening done. She is 1 now for the first everything was great she only has low hyphe which i thought was really good, but now i am having alot of problems with her reading the side effects of pku about cranky babies, diaherra and a couple other things we have been having problems with her with this for about 2 mths now i dont know if it has to do with the pku or not the doctors to me dont seem to know what they are talking about neither anymore so if there is anyone who can maybe help me or direct me where i can find out more please let me know. thank you

Viewing 15 posts - 1 through 15 (of 18 total)
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