PKU.com Community Discussion Forum New to PKU.com What do you think about PKU

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #6417
    Avatar of Jack
    JackJack
    Member

    Hi Please tell me what you think about PKU and I will tell you what I think about it.

    #6426
    Avatar of Breanna
    BreaMarie91
    Member

    What do I think about PKU? Hmm…It’s not something I think about to often. I really don’t mind having PKU I guess, atleast not anymore that is I used to be a jerk-face when it came to the diet when I was younger . Now it’s just something I deal with it and that’s the way it goes. There is no use in pouting over it or anything because that isn’t going to take our PKU away and besides there are so many worse things we could have! Thankfully our PKU can be control with a simple diet, other genetic disorders aren’t that easy.
    I guess I don’t mind, it’s something that makes me unique and my friends think it’s pretty neat. nBre

    #6431
    Avatar of Jack
    JackJack
    Member

    I don’t think its that bad I like trying new things new low protein or vegetable Recipes!!!

    #6458
    Avatar of
    Anonymous

    [/COLOR][/SIZE][/FONT]hello jack and Bre… its Amanda… bre u know me from facebook and my site.. ur really on alot of sites hey ..lol..and nice to meet u jack…
    for me i was totally horrbile with my PKU , rigth fromt the begining untill i was about 19. i am 21 now. and my life has changed for the better.. driasticly.. i am so much healthier and have a much more active role in my pku and health care. i brougth my levels from 20 down to 1 ..now they sorta sit between 6-9mg. i do so much baking and always try new recipes. i look forward to doing my levels even goign to clinic. but i think my fav thing about PKU is food shopping and tryign lots of new products…one of the hardest and best lesson i had to learn was pku was not something that was ever gonna go away.. and its a life style . so i embraced it and became healthy. so over all i just think my PKU is me![FONT=Courier][SIZE=16][COLOR=orange]

    #6477
    Avatar of Breanna
    BreaMarie91
    Member

    Lol, yep I’m bascially everywhere (secretly I’m stalking all the PKU’ers jk!). nBre

    #6479
    Avatar of
    Anonymous

    hey brea u know any other sites that i migth find useful to me? or other sites like this were i can chat with ppl…even if u know of any sites simliar to this one for other metabolic or gentetic diseases? im intrested in learing about all the other condtions out there. exspecally ones like diabites, CF, dwonsydrome, sickle cell etc etc.. any help u could provide would be appricated? also do u have any instant chats anymore like msn or yahoo? id love to start talking to u again.. even if u have the instant msging applcation on facebook let me know. it sounds that we are considering similar carrer paths!

    #6482
    Avatar of Cadnum
    jabberwocky
    Member

    Hey Amanda, nA really good website that I found is ygyh.org
    It has comprehensive information about lots of genetic conditions, with video interviews.

    #6484
    Avatar of
    Anonymous

    thank u so much Jabberwocky. i will look into that !!

    #6485
    Avatar of Breanna
    BreaMarie91
    Member

    I’m just going to rattle off a bunch of random websites, if you haven’t been to them then check them out. They’re all pretty much PKU sites:
    http://www.pkuboard.info
    http://www.myspecialdiet.com
    http://groups.msn.com/pkuyouthandyoungadults
    http://groups.msn.com/pkuworld
    http://groups.msn.com/NorthAmericanPKUAlliance
    These ones don’t have message boards (as far as I know) but they are also helpful sites:
    http://www.cambrookefoods.com
    http://www.dietforlife.com
    http://www.shsna.com
    And finally there is the listserv where you can signup and then through emails you can post questions and stuff and it will get sent out to all of the people on the mailing list. If you haven’t heard of it before and don’t know how it works you kind of have to read through the things on the site to understand it. I’ll leave you with the website to sign up for the listserv but let me warn you, if you join your mail inbox will fill up quicker then normal .
    Lol, don’t ask how the heck I know all of these websites…I just do. nBre

    #6486
    Avatar of
    Anonymous

    lol thanks bre i actually am a member of that listserv and i get up to 30 emails a day and i have been to most of thouse sites and will check the others as soon as i can(im at owrk rogth now) i actually have created a new email specifically for the pku listserv and and pku related things.. ur welcome to send me any info u have there (f u have any more)

    #7587
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi there its Tracie-PKU,
    I guess for me it was acceptance. nAccepting the change for the better.
    I don’t really like to cook,but the more i experiment the better it gets. nPlus i have the neighbors who are awesome. nThey actually try some of my recipes,and i do for warn them(i am not a cook). nAlso it gets exhausting when i prep not one dinner,but also dinner for my family. nFor example: tonight i made my veggie dish ,and salad,but i am also preparing a chicken dinner for my husband and daughter.
    Over-all we could have it worse.
    I am just Thankful to be caught at birth,and not at 3 or 4 yrs of age.
    Anyways Lets Just keep up the great job of support on this sight.
    Thanks Again, nTracie

Viewing 11 posts - 1 through 11 (of 11 total)
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