Having PKU is not easy. Your care team can help.

It’s true, living with PKU has a lot of challenges and it needs to be managed for your entire life. But remember that you don't have to do it alone - resources and support from your care team can help you to manage your PKU.

Keep in mind

Unmanaged PKU affects the way you think, feel and act.

High or unstable blood Phe levels can damage the brain and make many aspects of everyday life more difficult, including building relationships, planning for an event or trip and completing tasks at home, work or school.


Start a conversation.

The recommended way to keep your brain healthy and focused is to own your PKU management. Having an honest conversation with your care team is important for lifelong PKU management.

  • Sticking to a PKU-friendly diet
  • Taking your supplements
  • Monitoring blood Phe levels
  • Regular visits to your PKU clinic

When a friend or colleague asks about PKU, what do you say?

It might be easy to describe PKU as a dietary disorder, but PKU can have a big effect on the brain too.

Next time, try explaining the impact that PKU has on a developing brain. This will help others understand how important it is to pay attention to the foods you are eating.

Sticking with a management is hard, but it’s important.

PKU involves a lifelong commitment to care.