UK (English)
Keith,living with PKU for more than 40 years
PKU experts recommend that all people with PKU should have lifelong follow-up
A group of experts who specialise in the management of PKU created guidelines to assist doctors who treat people with PKU.
According to these guidelines, people with PKU should:
Start PKU management early. PKU management should begin no later than 10 days of age.
Manage PKU for life. PKU is a lifelong condition that requires lifelong care.
Keep Phe levels within range. The amount of Phe in a PKU diet is important to monitor and will be different for every person with PKU. Experts recommend keeping blood Phe levels between 120 and 360 µmol/L for children <12 years old and pregnant women, and between 120 and 600 µmol/L for people over the age of 12 years.
Restart management. It is never too late to manage PKU. People with PKU who restart therapy may see an improvement in symptoms.
See how PKU impacts
