PKU.com Community Discussion Forum New to PKU.com MIld Hyperphe Reply To: MIld Hyperphe

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Anonymous

i was diganosed with pku when i was 2 weeks old.i am now 21. i have been on the diet my hole life.. i cant even imajin ever going off of it . i live in Victoria BC canada. it is mandatory to be on the diet for life. i have read about americans that can go off the diet , some have little sideffect or none while others have so many or brain damage..i know i struggeld with the diet as a teen and as a reslut i have mild memory loss and lost 1 IQ point.. but honestly i cant really tell.. im normal and healthy and leave a prospers life. i would say to all the new parents of pku children that u shouldnt worry to much.. there has been so many improvements in the last 20 yrs , that makes life so much easier.. i know that there will be so many more advancements to come. PKU is not a problem or disese to me. it is just a way of life. a lifestyle choice for me, cause if i was told tomorrow theres a cure and i can go off diet. i wouldnt.
basicly for me i am a vegaterian who has specailly made products like pastas and baked goods. that is the easiest way to explain it. i eat unlimited amounts of fruits and vegatlbes and cook them in many diffrent ways, then i have some normal foods like ceral, rice, bread or something like that.. and my low pro foods. some ppl dont even notice that im diffrent or eat diffrent.. the only thing they ever notice is my milk , which i drink 4 times a day with each meal. and they hardly ever ask. having PKU in this time era is so much more conivent and easy. nif u have any other questions feel free to contact me!

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