The PKU Handbook

When phenylketonuria (PKU) is detected, treated early and well controlled, children with PKU have good outcomes. The period between birth and finding out your baby has PKU is too short to cause problems. Early detection and lifelong treatment have been successful in preventing the damage caused by untreated PKU.

This handbook contains informatioon on PKU management, inheritance and phenylalanine (phe) monitoring. It is a tool to assist with the practicalities of a low-protein diet throughout all stages of life and gives details of available support. It also includes information, advice and encouragement from people who live with PKU and their families. The ‘Glossary’ at the back of the handbook gives simple explanations of all medical terms used throughout the book.