first one

first one

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first one

July 8, 2014 in Living with PKU

I have never talked to a anyone with pku before. I am the only one with pku that I know. people I talk to never know what pku is so I have to tell them so they know what im talking about. it would be nice to have some friends that have pku. then I mite not feel like a freak.

4 Reviews of first one

  1. Registered: Apr 25, 2014

    Posts: 0

    Buffalo, New York

    I know how you feel I don’t know anyone else who has it either it’s hard and a lot of people take it as a joke they see me as being normal so they don’t see how server it is that’s why I think I have been struggling with getting back on my diet I don’t really have much support but if you would like to chat I’m am here I would love to meet people with PKU as well

  2. Registered: Apr 25, 2014

    Posts: 0

    Buffalo, New York

    Oh and by the way I.m rebecca

  3. Registered: Aug 1, 2014

    Posts: 0

    Garden Grove, California

    hey my names Andrea, i know exactly how you feel im in highschool and none of my friends have pku or even know what it is. its a struggle to always have to explain to people what pku is but it gets easier. ive struggled overtime to stick to my diet but now that im older im starting to get back on track. i really would like to meet other with pku because i really enjoy actual talk to people who understand what pku is. but if you have any questions or just want to talk message me. well i hope you have a wonderful day.

  4. Registered: Apr 16, 2016

    Posts: 0

    No Location

    Hi olivia I also know how you feel I also have pku and always felt I had to explain to people about having a blood dissorder and not being able to eat anything with protein wich is virtually everything thats how I explain it to others when I was pregnant I found myself explaining to people all the time about being on a special diet but what you were saying about having a food alergy I think thats a good description …also at school I always had to explain things but now im a lot older im finding out mire about pku from being on this website and reading other peoples stories wich I find interesting to read.I also have a sister who has pku but shes nit on her diet but I whent back on it in january I take the pku air coolers they are not bad to take….I would also like to find some friends to talk to about pku as I think it would be good to find out about what other people are going through so if you want to chat it wouldnt be a problem

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