Community Discussion Forum New to adult pku Reply To: adult pku

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Hi, my name is Laura, I was strictly on the diet til I was about 21, decided to relax it a bit then.  I think when it comes to the doctors I feel exactly opposite to the people above, I really don't feel any different on or off my diet.  I still take the amino acid suppliments.  I'm now 32, don't have any kids, but a gorgeous husband.  I don't have anything that I can really attribute to PKU, although apparently I am the 'classic' kind.  I live in Glasgow in the UK, have given up on the doctors that we have here, have fought with them constantly since I was 13, and because I was able to ask questions they didn't really like that.  I ask difficult questions that I expect an answer to as they are the self proclaimed 'experts'.  I really disagree with this.  WE are the experts, we are living with this on a daily basis, they clock off after their shift and probably don't give us a second thought.  Sorry about the rant but I just believe most of the time doctors just don't list to us.

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