Community Discussion Forum New to PKU Questions

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    Avatar of Kira

    I was diagnosed with PKU at birth (I’m 15 now), but was never treated, so I have a couple of questions about it.
    What percent of PKU positive people show no signs of having PKU?
    I’ve never followed a special diet. Does that mean I’ll never have to, or could the symptoms kick in at any time?
    Just curious about those two things.
    Thanks– Kira

    Avatar of Breanna

    Your probably hyperphe. Hyperphe people are able to eat much more then people like me, who have Classical PKU. Sometimes it’s enough that you don’t have to monitor your diet, that’s probably your case. Someday when you decide to get pregnant you might need to follow the diet, but I doubt it would be very strict. If your phe levels aren’t exactly where they need to be while your pregnant it can effect the baby in a lot of dangerous ways (mental retardation, possible miscarriage, microcephaly etc). But for now I wouldn’t worry. When you were born your levels were probably low enough on a normal diet that you didn’t need the diet. Ask your parents about it! They should be able to tell you why your not on the PKU diet. nBreanna 16 CPKU

    Avatar of virginia

    2 of my husbands siblings have PKU. Don was on the diet until age 5. He suffered with mental retardation but was functional. He had is own apartment, paid bill, shopped, cooked..He died recently of a rare disease called Amyloidosis at the age of 50. Bree, now 42 was never on the diet and is also retarded. She is less functional, can’t cook, read, write..My husband and I will soon be caring for her as my inlaws health fails rapidly. My first question is this..If Bree continues to eat anything she wants which is lots of meat,eggs,and cheese, will her brain damage continue or is the damage sort of complete??? I am trying to educate myself before she comes to live with us. nThanks — Jen

    Avatar of Tracie

    Hi Kira, nMay i ask what type of PKU you have?
    I am BorderlinePKU,but i still require a diet.
    I did go off diet at a young age. nAs i grew older the problems kicked in. nDepression,Anger,Tremors and Joint problems.
    I am also a recovering anorexic.(very open about it) nJust read yourself.
    1. Suffering in school? n2.arguing (doesn’t matter who with) n3.Just overall not feeling right? n4.When you do eat meat headaches/fatigue?
    Just keep an eye on yourself.It will be worth it.
    I am here if you need to talk.

Viewing 4 posts - 1 through 4 (of 4 total)
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