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

Living with PKU

It’s never too late to get back to care.

There are more ways to manage PKU than ever before. With PKU, experts recommend using every available option to manage PKU. No matter how long you’ve been away from a clinic, many symptoms caused by high or unstable blood phenylalanine (Phe) levels can be improved. That’s why it’s so important to manage PKU for life—because it will keep your brain healthy and focused.

The symptoms of high or unstable blood Phe levels can be hard to recognize.

High blood Phe levels can affect the way a person thinks, feels, and interacts with others. When Phe levels are high or uncontrolled, people with PKU can experience symptoms that occur slowly and have lasting impacts on the brain. Symptoms of high or unstable blood Phe levels include:

  • Behavioral or social problems
  • Problems with memory
  • “Fogginess,” or a slowed processing of information
  • Inattention
  • Difficulty in decision making, problem solving, and planning
  • Depression
  • Anxiety
  • Irritability

Get help with PKU management by involving your care team.

Find a clinic

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Tips to help you ask the right questions.

Clinic discussion guide

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Get help and support with management.

View PKU resources

Discover your options.

Going to a clinic will help you learn about options to help you manage PKU. Your care team can help you identify symptoms of high or unstable blood Phe levels, and they can help you determine if what you are experiencing is PKU-related.

Having an honest conversation with a PKU care team can help create a management plan that works within your everyday life. Be sure to be honest and open with your team about what’s difficult, so that they can better help you.

Find a PKU clinic near you

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Stay connected with social media.

Building your PKU community can help you learn how others manage their PKU.

Join the community