Community Discussion Forum Adults and PKU 32 and PKU Reply To: 32 and PKU

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I would agree with smorff. You would probably have to find a medical geneticist near your, or a metabolic dietitian or somebody like that. They would most likely run some sort of blood tests on you to see how much Phenylalanine is in your blood stream. And yes, you probably have a very, very mild case of PKU if you don’t have to watch anything. Are you sure you aren’t just a carrier or PKU (somebody who only carries the gene…which would be what parents of PKU’ers are). Don’t worry at all, you did not come off sounding arrogant at all!
If you had a more serious case like me and my little sister (Erica is 8 and is the other one out of the 7 of us with PKU)do then if you ate things with to much Phenylalanine in it nothing would happen at first. It’s kind of a slow progressing thing, but I know that if I eat to much high protein foods in a day then I do get tired alot easier. Other things that could happen would be things like headaches, lack of concentration, lack of energy, tremors/shakes, faster reflexes then normal and eventually if blood levels aren’t good for along enough time then seizures could accour. nAnd don’t say sorry for the fact that we live with special diets I’ve got PKU and I’m proud of it! Yeah, the lack of variety in food and the frequent blood tests does get annoying at times but whatever, atleast PKU is something that allows me to live a perfectly normal life. There are alot of other worse things like diabetis, down syndrome, cancer ect that us PKU’ers could have! So I count myself lucky that besides what I eat I’m just like my Non-PKU siblings. nBreanna n15 (16 in June!) w/CPKU

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