Community Discussion Forum New to just like me

Viewing 9 posts - 1 through 9 (of 9 total)
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    Avatar of lucie

    hi my name is lucie i am 34 and i live in gloucestershire, iam an adult pku off diet. iam struggling with the diet as i have no one around me that really understands how it feels. i have 3 children twin boys 9 and a little girl who is 5, they are mixed race and not pku , thank god!! i have never met any other pku people , and feel very different from everyone around me. when i try to resume my diet , everyone is pushing me to do it bit they dont understand how hard it is , especially taking the supplements. i would really like to meet other pku adults like me , i was born in 1973 and as i grew up they kept telling me that i could come off my diet , in my teens and so as to fit in with my friends and not have to explain , i really have not been on my diet since then except for when i was pregnant, i want so much to try to embrace the real me , the pku me but its very hard when there is no one around to support and understand you, please help me if you can lucie xx

    Avatar of Missy

    Hi Lucie I sent you a friend request. My name is Missy. I am 33 yrs old and I live in Ohio USA. I have never been off of diet but I did get somewhat relaxed on the diet (eating more of the foods I can eat but still getting my formula though) for a few years. Well I have an 11 month old daughter who doesn’t have PKU and is very happy and healthy. If you would like to talk sometime feel free to get ahold of me on here. Talk to you soon.


    Hey my name is aaron and I have had pku all my life im28 now and just looking for people to relate to.. thanks

    Avatar of John

    Hi Iam John, I have been off the Diet for many years (9yrs old to now 42), Iam starting up the diet again, but before that I am trying the Kuvan without changing my diet.
    I have 2 childern that are without PKU, glad for that. Iam just looking for any information that anybody could give me, ie: if Kuvan has worked, what do you experience when you don’t follow the diet, just any insight, since it has been many years for me so what I think is normal my not be. It is nice know that there are many others with the same questions as I have had, and now there is a place that we can all share our experiences.

    Avatar of Tracie

    Hi Strawberry nMy name is Tracie and i am 39 yrs.
    I have just started back on diet myself.
    I know what you mean feeling different.
    I live in a town of 1100 people and majority are children.
    I feel very isolated,and need alot of support.
    I sent you a friends request. nYou live in a beautiful area. nHang in there take your diet 1 day at a time. nThats what i have to do. nWhat i probally dislike most is trying to stay full. nMay i ask what kind of PKU do you have ?
    I am consider borderline PKU. nSo my body breaksdown some protien,but of course the doctors don’t know how or why. nTalk to me anytime.
    Take care, nTracie

    Avatar of Lucy

    Hello to everyone of you. My name is Lucy and I am 50 years old and was born with PKU. I was off diet my whole life except when pregnant. I was not on the diet when I got pregnant. I know what strawberry feels as I have always felt different. I was on the diet a few years ago after being on the diet my whole life. I did see a difference, but because of finances I was not able to continue the diet. I was on this site a while back and have returned to see what new developments have been made. PKU for me was not a good thing in my experience. I always blamed PKU for my failings when I was younger, but now I just want to learn more about it I know something, but things are alot different than when I was on the diet when I was a child. It seems everyone here on this site are much younger than myself and so can’t feel that I have much in common other than PKU. I have a grown daughter who is PKU free only a carrier. She has two children who are PKU free. I stayed on my diet during pregnancy and followed it very strickly. She was born with a heart problem, but was corrected at age 4 she if fine now. Sorry if I got off the subject. We who have PKU are different, but that is what makes us special I think. I don’t think anyone who does not understand PKU will every fully understand. I think we should learn as much as we can and then explain it to our friends and if they are your friends they won’t ask you to got off your diet if they know it will hurt you. Well that is my two cents worth. Thanks for listening. Lucy CPKU

    Avatar of Tracie

    Hi Lucy,
    I like your comments on how to educate our friends. nWE are special people,but all of us can look at it this way “WE all have a very healthy diet”. nLook at the world today,and all the non-healthy foods they all eat.
    I’m not going to lie it was difficult going back on diet after being off for 20 years.OUCH!LOL
    After being back on now for 5 months now i can totally tell feel a difference in my attitude,
    memory,and personality.
    It does take a while to adjust,but for me it was well worth it.
    Now i don’t even like to touch any type of meat product,poultry,fish,and bacon is probably the worst.
    I don’t even crave it anymore,which is a great feeling. nWhen going back on diet go day by day.
    Its going to be repition(i’m sure i spelt that wrong).Doing it over and over again. nPlus just knowing what meat does to your body kind of groses me out.LOL
    Talk to you soon, nTracie-PKU

    Avatar of Eugene

    I was born with PKU but moderate PKU. On january 2, 2009 I felt weird at the gym when I was working out. Finally I got into the doctor and they said my levels were 1745. I have always eaten everything I wanted. I’d eat 1 pound of sausage which I made myself. Now I eat 20 grams of protein and my head is still not right. I think you could say I now have classical PKU. I didn’t before. Has anyone else had something similar to this happen. I have never had any problem until this year.

    Avatar of Tracie

    Hi Bad_Code,
    I can relate to you and, not quite feeling right in the head.
    I know i was told off of my Dr. that the longer you are off diet you can do permanant damage.
    I too am mild PKU,and i was off diet for along time.
    I would say with myself now being back on diet.
    I can’t concentrate on anything,i have daily headaches,and definilty Aniexty.
    I thought these things would get better as long i was on diet .I was wrong,but i can’t afford to keep messing around with my body that way. nStay strong.I know being on diet is hard,and for some costly,but it will be well worth it.
    I’vew been on for at least 6 months,and i have to say my husband really appreciates it.
    I am just a strict Vegan,and actually enjoy my food now.
    I’m here if you have any questions.
    Friends, nTracie-PKU

Viewing 9 posts - 1 through 9 (of 9 total)
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