This website is intended for residents of the United States of America interested in Phenylketonuria, also called PKU

Taking charge of your PKU

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. You know this—you’ve been managing PKU your entire life. But you can’t do it alone, and you shouldn’t have to. So why not have an entire team who has your back? You can manage your PKU with resources and support from your care team.

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Keep in mind

Unmanaged PKU affects the way you think, feel, and act.
High or unstable blood phenylalanine (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.

“I don’t always notice when my Phe levels are high, but the people around me do.”

See why and how others made their journey back to a PKU clinic after not managing their PKU.

Start a conversation.

The best 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
  • Drinking your formula
  • Monitoring blood Phe levels
  • Making visits to a PKU clinic

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

It might be easy to describe PKU as a diet thing—but the truth is, it’s really a brain thing.
Next time, try explaining the impact that PKU has on a developing brain.

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Connect with people who understand your experiences.

Together, you can encourage each other to develop better PKU care habits and help each other stay on track.

Start a conversation about PKU


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


PKU involves a lifelong commitment to care.