Community Discussion Forum Adults and PKU PKU at 50 Reply To: PKU at 50

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Anne Mc

Hi there,
I help to support a gentleman in his early 60s who has PKU. He has severe intellectual/learning disabilities and requires support for most of his day to day activities like washing and dressing, shopping socialising etc We do not have access to his old medical files but has been looked after in the community for about 7years without a low Phe diet. nHe has some behavioural problems as well but mostly used to just sit around all day,very lethargic and difficult to motivate. nBecause of his age he looks just like any other 60yr old man and as the oyher staff who look after him are untrained and inexperienced in learning disabilty or intellectual disability no one actually knew about his condition and the need to be on diet or at least referred to a specialist for advice.
I am glad to say that he is now on a low Phe diet and within a very short time he had become more energetic and appeared to be enjoying his days more than before. he became very talkative and was smiling and laughing whereas before he was quite moody and as i said before uninterested and lethargic. nBecause the research on PKU is a bit ambiguous it is difficult for staff who have no formal training/experience to find the right information so Im so glad to have access to this site and the information it provides.

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