It’s not just about diet. It’s about protecting your brain.
There are more ways to manage PKU than ever before. With PKU, diet is important, but experts recommend using every available option to manage PKU. No matter how long you’ve been off diet or 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.
"It’s so much more complex than just avoiding protein or drinking your formula."
Watch this video about the science of PKU and the brain.
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
- Difficulty in decision making, problem solving, and planning
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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Building your PKU community can help you learn how others manage their PKU.
Get help and support with management.
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Join the PKU & ME program for support and guidance on living a healthy life with PKU.