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

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.

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional