Avatar of Rachel


May 22, 2012 in Uncategorized

hey guys Rachel again i just wanted to know wether anyone else who grew up with PKU found it difficult when they were a child coz i know i did feel that way. i don't have a reason why i was like that i think it was just childhood ignorance that i couldn't understand why i couldn't have what everyone else was having and why i had to watch what i ate.i've had it for 19 years now and i'm keeping to it as well as ever but i couldn't for the life of me understand it when i was small. so i was just curious if anyone else felt like that or if they had no problem at all look forward to your replies toodles Rachel

5 Reviews of struggle

  1. Registered: Apr 17, 2011

    Posts: 0

    hesperiaNo Location

    hey rachel, my name is andrea and i know what you are going throw im going throw the same thing as you and well im like glad i have pku because its not that bad but i well tell you when i was little it was really hard for me because my parents were devorced but it was really hard cuz i always wondered why i couldnt eat what every one else ate and i felt really sad and left out . now i understand why i cant have the things every one else has. but like i hate the fact that people always judge how deffrent people are . what do you have to us for your pku ? anways ive got to go but i hope you reply to my comment and if you need help with any ideas and Questions just message me and i well try and anwser them .

  2. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    I see my 2,5 year old daughter to want her spaghetti with meat, like her friend in kindergarden. When I say to her * yes, but that’s Nikoleta’s food, your’s is spaghetti with mushroom sauce* she sas * Oh, ok.* But next morning it is * I want my spaghetti with meat* again ! I guess that no child can understand any restrain, either it is food, PKU or not, or an game, or something. We all want to be *normal* when younger. Sorry for the comment, I feel like an intruder, but I even if I ‘m not PKU, I am a little older…..

  3. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    i saw you blog and i know what you are saying about it not always being easy but keep up the good work because i am 23 and i have had it scence i waa three months old so i know where you are coming from … i hope that you are doing well with your diet i just started doing well kuvan enough to start the trial run on kuvan i hope that you are able to try my doctors said that my level are doing so well that my levels have been as low asthey have been scence 2008 and they were down to 13.1 which is really good for me because my levels were always high so when they told me that i was really happy , but recently i lost a very important family member in my life and i had a set back with my formula . but now i am trying to get back on track i hope to hear back from you soon

  4. Registered: Jun 3, 2010

    Posts: 0

    Heilbronn, INTERNATIONAL

    Hi there,

    well I was lucky and I had a very understanding environment. There were only few people who act in a stupid way (“oh I don’t think that one piece of this cake could do any harm, just have one!”) But nevertheless I had my problems with PKU and I am also struggling from time to time – it’s not easy… but we can make it :)

    Katie xxx

  5. Registered: Jun 8, 2012

    Posts: 0

    Derbyshire, INTERNATIONAL

    Hi Rachel
    I know where your coming from. I have 2 older brothers and an older sister all of which are PKU free which as the youngest of the litter felt very unfair. My brother of course being just a year older enjoyed tormenting me where ever possible, as I could only eat 6 grams of protein a day, chocolate was mostly off the cards and he made a point of eating it very dramatically in front of me. My mum and dad were very sensible with it all and always punished him for teasing but never hid what he ate from me as they told me I had to get used to not eating what everyone else could, it wasn’t fair but that’s life! I think in an unfortunate way it helped my understanding because my dad suffered with a disability that he was born with and he was in pain a lot of the time, which made me realise that there are worse things in life than a restricted diet, as my dad would remind me if I moaned!
    It was harder at school but mostly because of all the questions from curious friends but I find it more annoying now dealing with stubborn doctors that don’t really understand PKU and try to restrict my prescriptions all the time.
    Well done for keeping at it and good luck with it in the future

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