Community Discussion Forum New to This site is slow

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #7145
    Avatar of rebecca

    Not bashing at all. I love this idea. I have noticed not alot of people come here frequently though. Do people not know this site is available? I have wanted to talk to others with PKU for a long time. If there were more frequent discussions I would come here everyday!!!! A PKU chat would be awesome.

    Avatar of

    I know what you mean. i only stumbled across this site by chance.. am passing the info along though. Maybe it just need more of a proactive approach to getting members. Is there not one big database with all PKU people somwhere?

    Avatar of claire

    i have an 12 year old and a 7 year old both have pku . i didnt know about this site.

    Avatar of Breanna

    I just stumbled across this site to. I was bored out of my mind, googling random words and this site popped up. But then a few months later I went to PKU clinic and they did have a flier posted on a bulletin board for this website.

    Avatar of Tracie

    Same here everyone,
    I just came across this site,and now i am on alot. nLooking for the extra support,recipes,PKU friends.
    It is just so rare where i live. nAsotin Wa. POP:1100 people and the majority are kids.
    The Drs. that have met me are amazed at what WE have.
    Isn’t it great when you need to inform your Dietition as well as Family Dr. on what PKU nis.
    Seriously that is why i go back to Cali to see nDr. Koch.
    Take care, nTracie-PKU

    Avatar of Meaghan

    Another part of it is though that a lot of us that are on the site are either students or parents with full-time jobs. I personally am a college student taking 5 classes, on a board, and am acting in a production. Time just doesn’t allow this site haha. I wish I could get on here more.

    Avatar of Breanna

    If you guys want a more active way of keeping in touch with others who have PKU you could always try the PKU Listserv.

Viewing 7 posts - 1 through 7 (of 7 total)
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