Community Discussion Forum That’s PKU life! temper tantrums Reply To: temper tantrums

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I’ve lived with PKU all my life when I was younger I never thought about it as much just went along with it drinking the nasty formula and trying to stay on diet! This past year in high schoo has opened my eyes to the truth of PKU. The truth is every person ever cursed with ths god forsaken disorder lives behind a fence we can only walk so far before we hit the other end of the fence. The same goes with a persons diet their PHE limit per day is the size of the fence if you an have 300mg a day ur yard is fairly big if you can get 1000mg a day you have Fenway Park all to yourself but its how if you stay inside your fence you won’t get hurt step outside of it and your just causing yourself harm. There has never been one time in my life where I have ever enjoyed having PKU I hate the fact that I am a lke a dog on a choke collar I hate the fact that I am a slave to survival by not being able to eat what I want without having to be punished for it. Another thing that really ticks me off is all these stupid technicians creating better meters for diabetics when people with PKU could use something like that imagine being able to do the same monitoring your phe intake a day so u can say on track>This would a tremendous bump in trying to keep people on diet and safe! So as you can tell I hate PKU I always have ad always will!!!!!!

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