PKU.com Community Discussion Forum Adults and PKU Early 20’s with P.K.U.

Viewing 15 posts - 1 through 15 (of 30 total)
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  • #5092

    Hi everyone my name is kelly i am 22 and am interested in talking to other people my age with pku, im from ireland and wonder if there are any more irish people my age on the forum or anywhere that would like to talk about daily pku life

    #5094
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Kelly, my name’s Breanna, I’m only 15 but thought I’d drop by and say I’m irish too! But only like 1/2 and then I’m like a forth phillipino and a forth of something else. Anyway if you want to ever talk just give me alittle message. nBreanna
    ps sorry for invading the adult board for a moment.

    #5095
    Avatar of Breanna
    BreaMarie91
    Member

    Oh one more thing, we don’t live in ireland though we’re in america.

    #5098
    Avatar of Claire
    claire
    Member

    Hi Kelly,
    My name is claire and im 24 and im from ireland too.
    What part of ireland ru from im from dublin.
    Do u attend temple street? I do im on 11 exchanges.
    anyway if u wanna chat im here
    claire

    #5101

    heya, nBrenna whats up?That’s cool you’ve a bit of irish blood!where in the states u from?i visited a few times,on all my visits i found it hard to eat out over there.must b hard for you.In saying that I don’t stick to the diet religously!!!
    Claire hey what part of dub u from?i’m from Tallaght,kilnamanagh.yea i go to temple street,well haven’t went for a visit in a few years.They should really start a social club or something.I read on your profile u have 11 exchanges,do u stick to them?Do u take the PKU express?At the moment I’m off and on the diet,jus wondering how u cope with it.I have been this way for years.Would love to go back on but it’s very difficult.And someday I do want a family so I’m thinking that’s it just the right thing to do now.Any advice or just what you eat on a daily basis be great…
    Thanks

    #5107
    Avatar of Claire
    claire
    Member

    Hi Kelly,
    That is mad im from tallaght too. I live in aylesbury so not far from u at all.
    Thats weird i never knew anyone else in tallaght wit pku except for one girl that used to live in homelawns.
    I dont really stick to my 11 exchanges to tell u the truth i try most days but i dont go over 2 much usually. I take phlexy 10 sachets i take 7 a day and 5 phlexy vit tablets. I go to temple st about once a year now was der in august and not der again till next august. My cousin has pku aswell and she is only 5 so she is at temple st a lot more so i find out if there is anything new from my auntie which is handy.
    I dont eat much of the prescription foods though i eat the pasta a good bit and use the lo profin milk on my cereal but other than that i eat normal food. I should eat the low protein bread but i cant i just havent eaten it in so long that i find it so hard now to get used to the taste.
    How many exchanges do u have?
    claire

    #5119
    Avatar of Amy
    sweetgrl
    Member

    hey everyone, just thought i’d drop a note and say hi. this is my first time here. my name is amy and i am 25 years old. i am from california in the usa. being on the diet is so hard. i never really eat any of the low protien foods because i think they taste like crap, or maybe i’m just used to eating regular foods. i don’t eat any meat,or fish. i do eat cheese and ice cream sometimes. i usually just eat fruits, veggies, pasta, rice, potatoes. so just thought i’d tell a little about myself. if anyone feels like chatting, or wants some advice, i’m here.

    #5376
    Avatar of Celina
    c mc donnell
    Member

    Hi Kelly my name is Celina and I am from Ireland too but i am afraid i am 35 not 22 Though i would love to be again. Do u attend Temple street Hospital? I find the diet now not too bad but when i was your age i was not on my diet very well. I also have a sister who has pku. She was always better than me at sticking to it but still not brilliant. Whereabouts in Ireland are from i am From Co. Louth.

    #5777
    Avatar of
    Anonymous

    hi everyone my name is Amanda but i go by mandy, im very new to pku.com but not to pku, i am 20 yrs old (21 in june) and i would love to chat with anyone my age or anyone at all! and i would be very intrested in meeting anyoen with pku in my area (victoria BC) also i have a PKU website at http://www.PKUersUnited.piczo.com check it out sometime and let me know how im doing! be sure to sign my guest book so i know u have been there!

    #5805
    Avatar of Brenda
    brend_ue
    Member

    Hello everyone
    i dont know how this all works …its not like a regular instant messanger which would be more easier to me.
    IF anyone actually reads this., i am 25 i live in United states, the state of New Hampshire, i have pku….no surprise there right?
    I hate it, its a curse, temptation is a Bitch, and i suppose there is the fact that im not always the best pku strict diet person there could be. However i may have the diet to struggle on …id like to chat with someone my age too….just so i know im not the only lost one out there. n-brenda

    #5814
    Avatar of Claire
    claire
    Member

    hi celina
    claire here im from ireland too, dublin what part of louth are u from dundalk is it.
    I am 25 and i go to temple st too. Im on really strict diet at moment cos i am hoping to try for a baby in near future my levels have been good lately but its hard going sometimes have to be really organised.
    Have u any children if u dont mind me asking?
    im on 14 exchanges at momentits going up an down a lot lately cos diet is so strict. I have mild/hyperphe pku so im told so i prob have a lot more exchanges than most on maternal diet
    claire

    #5827
    Avatar of Alicia
    aero9506
    Member

    Hi everyone my name is Alicia and I am new to this site. I thought this site might help me because I need to get back on my diet. I hope to get pregnant this summer so if anyone has info on that I would love to hear it. I am also looking for people around my age with PKU to talk to I don’t know anyone with PKU. Send me a message if you would like!
    Alicia

    #5831
    Avatar of Claire
    claire
    Member

    Hi alicia
    im in same situation as you at moment im on really strict diet cos i want to get pg.
    I never came off my diet its not done in ireland everyone is kept on diet for life. But i wasnt exactly being very good on diet for the last few years until after xmas when my husband and i decided we wanted to try for a baby now im on a really strict diet and haev my levels low enough so that if i did get pg it wud be ok.
    There is a really great website/forum http://www.pkuboard.info that has lots on useful info and there are a few women that do be on it that are going through the same thing
    claire

    #5834
    Avatar of Alicia
    aero9506
    Member

    hey claire,
    thanks for the info!! How long did it take you to get your levels down if you don’t mind me asking. I want to be pg by aug or sept at the latest. so i have like 2-3 mos. to get my levels down. I guess we just go off the diet cause we want to, the docs don’t like that very much. now its time to buckle down though cause i want kids bad. thanks again!!
    Alicia

    #5838
    Avatar of Claire
    claire
    Member

    hi alicia
    it took me about 2 months to get them down i suppose. Dietician said its diff for everyone but mine were down quite quickly but took 2 months to stabilise them. My dieticans are very helpful and im sending in bloods once at week at moment and then twice a week once im pg.
    I think the most important thing is just to do whatever ur dietician and doctors say. Mine have said i can starting trying now so i hope i get pg soon
    good luck hope all goes well fro you keep in touch if u want
    nclaire

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