A person has phenylketonuria (PKU) when thier body cannot process a chemical called phenylalanine. The resources in this section are for parents of babies and children with PKU, and also for teens and adults who have PKU —
PKU: A Guide for Parents of Babies Recently Screened
This guide explains what PKU is, how babies are tested for it, what effect it has, and how it is treated
PKU Primer for Adolescents and Adults
This guide features information for adolescents and adults with PKU. It includes: a definition of PKU, how it is inherited, how to maintain a healthy diet, how to handle school/work, and details about becoming pregnant if you are a woman who has PKU.
PKU Toolkit
This toolkit is designed to be a personal guide for adults with PKU, including comprehensive information about nutrition, diet, treatment, and lifestyle issues. It provides information, resources, checklists, and quizzes to help you better manage your PKU. Also included is information about new, more convenient and tasty options in PKU formula and low-protein foods. Reading this toolkit can also be useful for family, friends and significant others of adults with PKU.
Teens river rafting during Teen Challenge 2003
Teen Challenge
Teen Challenge is an exciting, three-day, summer event designed especially for teenagers (ages 13-18 years) with PKU or other metabolic conditions. The program is offered through the Metabolism program at Children’s Hospital Boston, and is designed to help teens build a supportive social network, try new and challenging activities, build resiliency and self-confidence, and build skills for independent health managment.
Maternal PKU Research Study
Women with PKU who have one or more children are invited to participate in this research study, and their children are eligible as well. The study is being conducted at Children’s Hospital Boston, and it’s purpose is to help doctors learn more about keeping mothers with PKU and their children healthy.
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