Managing PKU starts with understanding that you have to manage PKU for life. You only get one brain, and unmanaged PKU can cause permanent damage. That’s why it’s so important to develop a routine that you feel comfortable with now, and that you can continue to follow as you get older.
You may not even realize you are experiencing symptoms of high or unstable blood Phe levels, but the people around you might. Try talking to your family and friends about your PKU symptoms. Make your friends a part of your care team by sharing symptoms with them and helping them to understand why PKU management is important.
Building your PKU community can help you learn how others manage their PKU.
