Community Discussion Forum That’s PKU life! Caring for an adult with PKU

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    Avatar of Chris

    I am looking for help, i will soon be helping to care for a 56 yr old woman who has PKU. She has Learning Difficulties as a result of PKU remaining undiagnosed, and some behavioural challenges. Currently she is on a NO protein diet and looks undernourished. I manage a home in England that cares for adults with learning difficulties but this woman is my first experience of PKU. nShe was born in 1951 and has spent almost all her life in institutions – primarily because nobody knew what was wrong with her.
    I need to understand more about the condition and how best to care for her, I will be glad to hear from anyone who can give advice on diet, behaviour, and general health of adults with PKU. nThank you.

    Avatar of Sarah

    I am a 4o year old woman with PKU. There are many options but the first thing that needs to be done is to contact a dietician in your area. She might be able to lead you to a PKU clinic that can help you manage your patients PKU. There is special no phe formula that needs to be given for her to realize a low protein diet and still receive the nutrients that her body needs. PKU as you probably found out is the patients lack of ability to process the amino acid found in protein called phenylalanine. We as people with PKU don’t have an enzyme in our liver to process this amino acid into tyrosine for another part of our body. Therefore, it goes into our blood stream and it has the effects that your patient has experienced. I too was told to go to an institution but my mom didn’t listen. However, I was born in 1968 when all this had just been discovered. I would be happy to talk to you about how I manage my diet. But you still need to talk to a dietician and a doctor to see how hers should be managed.

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