PKU.com Community Discussion Forum Adults and PKU looking for friends with pku

Viewing 15 posts - 1 through 15 (of 24 total)
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    Posts
  • #7825
    Avatar of Rachael
    Rach_08
    Member

    hi im just writing to say hello to everyone, so what has everyone been up too lately?
    me, not much just working, i would like to
    talk to anyone with pku, it dosn’t matter what age you are.

    #7826
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Rach,
    I am Tracie,and yes i have Borderline PKU. nWelcome to the site.What type of PKU do you have?
    TTYS.Friends, nTracie-PKU

    #7856
    Avatar of Rachael
    Rach_08
    Member

    HEY TRACIE-PKU, HOW ARE YOU GOING? I HAVE THE SERVRE KIND OF PKU, I DON’T REALLY KNOW THE NAMES OF THE DIFERANT TYPES.

    #7871
    Avatar of Mark
    mark16121612
    Member

    Hey, Im mark, I have classical PKU, im 5 m from wales in the uk, If u wanna chat email me, martin-rooneyhotmail.co.uk
    I dont know anybody with pku either

    #7873
    Avatar of Lucy
    lucyday1
    Member

    Hi to everyone, I am Lucy from West Texas, USA. I have Classic PKU. Currently not on diet. I am probably older than you so was taken off diet when I was 5 years old. Don’t really have any problems with eating normal food. Hope all is well you all of you.

    #7926
    Avatar of Jean
    Jaycee
    Member

    Hi,
    I’m Jaycee. I have Classical Pku and I live about 3 1/2 hours from Sydney.
    I am 41 and was diagnosed when I was 3 months old. I am trying to return to diet.
    I am currently (attempting) to compile a book of pku life stories to commemorate the 75th anniversary of the discovery of pku. It’s taking me a long time to get it organized, not my good thing. nHope you are all well.

    #8012
    Avatar of Jeremy
    ArmyPKU99
    Member

    I have Classical PKU and have been monitoring, but not controlling my diet. I am currently in the Army (US) and have been working hard on mediating my diet and military life. I have gone off diet, in the past, to join and have suffered from malnutrion as well. It’s been a long road, but I hope to help anyone who’s struggling and find the silver lining in all of this mess.

    #8067
    Avatar of Nina
    polish
    Member

    hi everybody! my name is Nina and I have classical PKU. I`m just looking for somebody to talk to.

    #8076
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Rach,
    I am doing good.Getting over the flu.(Not Fun).
    I have borderline,which means my body breaks down some protein,they (Drs.) just don’t know how much.
    I also have the exact same gene mutation gotten off both my parents,which i guess is pretty rare.
    I am allowed to eat 60 grams of protein aday just no meats,fish,chicken,and certain pastas.
    Bascially all the good stuff.LOL
    I am a vegan,and i do enjoy it actually.
    It took me a wahile to get the hang of it again due to back in the day the Drs. didn’t realize the type of damage it would cause a patient if taken off diet at a young age. nSo thats exactly what happened to me. nMy parents took me off when i was 11 yrs old.
    I went back on in 1998 to have my daughter,then went back off until October 2008. nBy then the panick attacks have been there,constant headaches,emotional breakdowns,and worst of all PKU siezures.
    I don’t have any of those problems now since i put myself back on diet.
    Sorry i talk alot. nSo tell me bit about yourself? nFavorite Dish?Where u live? nWhat kind of supplement are u on? nHow are you doing with your diet? nDo you work? nHow old are you? nBrothers or sisters?
    Anyways talk to you later!
    Tracie-PKU

    #8082
    Avatar of Rebecca
    rrathbun
    Member

    Hey I’m Becca, I have classical PKU, and am trying to get back on diet really strictly after having my daughter. Was on Diet very strictly to have her and felt so much better. Anyone out there? It’s my first time here!

    #8084
    Avatar of JONAH
    jrhunter
    Member

    Hi !!! you all this is my first time here i have no clue what i am doing i have classic pku i am 42 years old i live in mt. storm, west virginia lucyday1, jaycee, tracie, rach08 all of you would be great to talk to. So i hope to hear from you like i said i am new here god knows i can’t find anything or how to talk here so i really do hope to hear from you nJonah

    #8095
    Avatar of petrina
    batwoman
    Member

    HIYA EVERYONE!!! ISN’T THE NET JUST AMAZING?? How class is it to be able to speak/write to you all from all over the world?? I am from Ireland and i have classical PKU. My 2 sisters also have it but my brother does not. I just spent the w-end with my sister in a hotel in county Cavan where we walked in woods etc..beautiful!The pamper suite was cool too!!The best bit was having someone else with the same diet so it was less embarrassing explaining why we couldn’t have anything on d menu!!We both have busy lives so we try to hook up once or twice a year.How is everyone?tell me what you did yesterday/typical day/last w-end???

    #8182
    Avatar of Keith
    Keith
    Participant

    Hi I'm Keith I live in Michigan.  I Have Classical PKU and I also am trying to get back on diet after about 2 years off and 10 years off before that.  I would like to talk to anyone who wonts to talk.  Any one else form Michigan.

    #8185
    Avatar of Breanna
    BreaMarie91
    Member

    Hey Keith83,

    I would be more than happy to talk with you :). I am not from Michigan. I am from Wisconsin, but my family and I are actually in Michigan right now for vacation. We came to visit my dad's grandma, and we are heading back home later today.

    ~Breanna 18 CPKU

    #8191
    Avatar of Anna
    bannie
    Member

    Hi everyone, my name is Anna and I'm 27 from Australia with Classical PKU. Have been on diet all my life but been quite slack in the last 10 years. Getting back on track now cause I want kids in the next year or so. I'm currently seeing the maternal PKU dietitian and I'm on 10g a day with 4 Lophlex a day. Would love to chat with any of you!

Viewing 15 posts - 1 through 15 (of 24 total)
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