You can prevent many symptoms of PKU by monitoring the foods you eat.
A PKU diet is not an easy diet to maintain, but it is important to do in order to protect your brain. That’s because toxic buildup of phenylalanine (Phe) in the brain can cause physical changes that lead to intellectual and behavioral problems.
Although some symptoms are permanent, many can be improved if blood Phe levels come back under control.
You may have heard something different in the past, but experts now agree that PKU must be managed for life.
Start PKU management early. PKU should be managed from birth with all available options to control blood Phe levels.
Manage PKU for life. PKU is a lifelong condition that requires lifelong care.
The impact of high or unstable blood Phe levels can be managed, and in some cases, symptoms can be improved.
Visit a PKU clinic and talk to a care team.Use the Clinic Finder to connect with a care team near you
Have an honest discussion with your care team.Try this Doctor Discussion Guide to help your conversation along
With a diet low in Phe and other forms of management, you can keep Phe levels low and stable.
Experts recommend that maintaining a blood Phe range of 2 to 6 mg/dL (120–360 μmol/L) is ideal. Everyone with PKU is different, and your care team will help you determine the right target range for you.
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Join the PKU & ME program for support and guidance on living a healthy life with PKU.