This website is intended for patients and caregivers in Europe, Canada, Australia and New Zealand

Getting Back on Track

It’s not just about diet. It’s about protecting your brain.

There are more ways to manage PKU than ever before. No matter how long you’ve been off diet or away from a clinic, many symptoms caused by high or unstable blood 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 recognise.

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:

  • Behavioural 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

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.

Tips to help you ask the right questions.

Get help and support with management.