PKU.com Community Discussion Forum New to PKU.com This site is slow

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #7145
    Avatar of rebecca
    msmudd
    Member

    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.

    #7146
    Avatar of
    Anonymous

    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?

    #7148
    Avatar of claire
    angel1
    Member

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

    #7155
    Avatar of Breanna
    BreaMarie91
    Member

    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.

    #7667
    Avatar of Tracie
    Tracie_PKU
    Member

    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

    #7673
    Avatar of Meaghan
    mayrogers13
    Member

    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.

    #7674
    Avatar of Breanna
    BreaMarie91
    Member

    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)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional