Life with pku

Life with pku

Avatar of khyrsten

Life with pku

August 10, 2009 in Uncategorized

Wow how do I start, well to be honest I've hated most my life with PKU I've had it since I was 10 days old andI have classic PKU. Ever since I was little I was teased or treated diffrent cause of it. I've even had people at day cares when I was little take away my home luches cause they didnt belive PKU was real. School was always missrabal kids poking fun telling other kids that if you were to touch me they would get it. So I decieded that was enough and told people that I was cured, and I went off my diet for 2 years. Once my parents found out i was sent to the hospital for 2 months so I could get back on my diet and see how serious this was. Around 6th grade I went back in for not drinking my formula I still have trouble to this day drinking it but I'm getting better. By the time I was in 8th grade I started making friends even though I was beyond shy. People became intrested in it but I still felt like I was from another planet. When high school finaly came around I relized PKU is something I'm going to have to deal with and if people have a problem with it then there not worth the time. I now have no problem telling people that I have PKU. I find it funny to watch peoples expressions on there face is priceless! I have friends that have knowed me for years that still make me food I cant eat but I'm so use to it. Every one in my life helps me. But why I write this is cause I've never met another pku person in my life for a while I thought I was the only one... and then when i was 14 I was told that people go threw what I do and that amazed me! Also I would love to talk to People with PKU and just hear what you have to deal with. so please feel free to email me!

6 Reviews of Life with pku

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I am so sorry to hear about how awful children tormented you simply because you had a “different” diet than your other peers. Today, it is so common for children to have food allergies and I can not even begin to imagine as a teacher how children could torment one another for it… In light of the situation, it certainly has made you a stronger, mature human being from it. I am proud that you are now able to accept your diet and have no shame to explain to others what PKU is… I used to be extremely shy myself with my PKU diet when I was younger.. Often times, I ate before I went to a birthday party or any kind of party involving food just so I did not have to deal with the issue of not being able to eat anything or eat “weird” compared to everyone else… Just like you, I am no proud to go around and explain to friends and colleagues of what exactly PKU is and how it can affect me…

    One last note… I too had a very difficult time intaking formula… I became sick from not taking it… I finally found a formula a year or two ago that my body can handle and because of how well I feel now, I am more determined than ever to never get that sick again…

    Best of luck to you!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    also….keep those positive people in your life… and avoid those who do not take time to understand who you are :) they are not worth it at all! They do not deserve your kindness or friendship

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    It is wonderful that you have a new found attitude towards your PKU! Keep that up. It will help you later in life. It is unfortunate that you went through all those hard times, but the positive way of looking at things is that those experiences brought you to where you are today! ~Breanna Hardy 18 CPKU

  4. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    No, you are not alone! I had some rough times in high school as well… high school and school in general is difficult, with PKU or not. And yes PKU does make you stand out… but I think in the end going through that has made us stronger. Like you, I realize now that people that don’t ‘get’ it or want to treat me differently because I have PKU aren’t worth the time, you’re right! With people like that I just try and ignore it and avoid the topic. But with people who are supportive— keep them close! They are the best people to have around, and even though they don’t know exactly what you are going through (who does that doesn’t have PKU?) they still care for you and want to support you. And, now that you found this site you can keep in touch with others going through the same things you are and have gone through!

  5. Registered: Mar 16, 2010

    Posts: 0

    TORONTO, Ontario

    you sounded like you were a commentator at my school making a report…
    and you were reporting on my life at school with pku
    i am a bit older im 38
    and the same as you …i also have classic pku
    andf was teased and bugged at school
    i did have a few good friends that were good about it.
    i was very similar
    after a while i was fed up with all the teasing and questions so i started to deny that i even had pku
    i went for years without admitting to my self that had pku
    i pretended that it was not me…
    that is why i applied for college
    i wanted to get in to college on my own merrits.
    unfortunately i never finished
    so i went back a few years later and did much better but i had financial problems
    and could not continue

    but the main point i did all this while being off diet.
    when i was 12 the dr.’s took me off diet on purpose…to see how i would develope
    is dont ever do it!
    never leave your diet.
    when i was a kid on diet i was the healthiest kid in my school as i am sure we all were…with pku
    but i was taken off diet and i started to have many problems develope over the years.

    high bloodpressure
    due to the major change of food
    i put on alot of weight
    and i am now 40 lbs overweight
    i now have hand tremmors and also troubles walking
    and practically no short term memory…
    i can remember things that noone can remember from back in the day./
    there are other things that started…if i ate certain foods (WHEN MY LEVELS WERE EXTRA HIGH)
    i tended to be a bit dopey sometimes i could not remember the simplest thing.
    and also a very hard time focussing


    just a question
    do you ever find that you think very fast
    sometimes i think way faster than anyone i know
    and they get frustrated because i am thinking a mile a minute…
    i tend to be a very quick mental thinker…i start having problems if i have to speak my thoughts.

    just a question.

    i was even abused because in school because of my pku.
    there was one day i remember in school
    when i was in school i never wore shorts…not even for gym.
    but back when i was in grade 3 when i was 8 years old
    i was refusing to wear shorts for gym class
    and the principal came into the change room and asked why i said i had no shorts
    so he grabbed an old pair of shorts out of the lost and found and ordered me to put them on…
    when i refused still
    the principal forced me to take off my pants and forced me to put the shorts on.
    and then sent me out into the schoolyard crying.

    you may wonder what this has to do with my pku…
    as you know we all have certain mental thoughts in our head that are brought on because of all the
    super strict diet and over-protecting our parents had to do…that tends to affect a child in certains ways…
    i developed a super shyness…as i’m sure you can relate to.
    i was very private about dressing
    i would not even take off my shirt in summer.,

    i dont remember if i ever reported the incident… but i guess it is out now.

    there is a good thing about having pku…
    because i had pku i had to work extra hard to make friends and keep them…i developed a very outgoing personality.. and i am a very outgoing and flamboyant personality.

    sometimes even to the point of being flirtatious.

    there is one great thing about going back on diet…i dont have to use lophenalac any more or phenex 2
    now they have stuff that tastes like fruitopia so all i have to do is put my powder into a bottle of fruitopia and shake.gotta love it…

    ***the main thing i need is some good support with going back on my diet…
    since i have been off for 26 years.***
    i am glad i found this site.

    thank you
    stephen sylvester
    Toronto, Ontario

  6. Registered: Jul 29, 2010

    Posts: 0

    Plainfield, Illinois

    I knew there were people with PKU but i did not know anyone would have so much in common. You don’t know me but we sure do have somethings in common, i sure didn’t like the phenex at all either. I struggled with my diet too.  

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