Disorder-Specific Survival Kit: Phenylketonuria

This section is designed to take you (the young adult with PKU) through the steps of adult PKU management and to help decide how you will fit PKU into your life. 

When you are finished reviewing this section, answer the questions at the bottom of the page.

For an in-depth look at transition and PKU management, see the PKU Adolescent Transition Currlculum.

Essentials of PKU
An informational pamphlet about PKU for young adults with PKU discusses the basics of PKU and PKU management.  Many people with PKU use this pamphlet to help their families and close friends understand PKU.

Making the Change: from High Phe to Low Phe
This brochure is an Acrobat PDF file. To view it, download Acrobat Reader™ here.
This brochure explains how to modify recipes to fit into a low phenylalanine meal plan.

Self Management Timeline
This brochure is an Acrobat PDF file. To view it, download Acrobat Reader™ here.
This timeline lists tasks associated with PKU management.  The UW PKU Clinic distributes this to families as they help their children to manage PKU.  Adults who successfully manage PKU have learned to incorporate the tasks on the timeline into their daily lives.

Now that you've reviewed this section, answer these questions:

• How will you make sure to have regular blood draws?
• Who do you call to order more formula?
• Where will you buy low protein foods?