In the past, PKU management was mostly about preventing disabilities in children, and doctors thought it was OK to take people off diet during childhood. Research now shows that “diet for life” is the best way for people with PKU to maintain good health.
Adults and teenagers with high Phe levels have reported symptoms like headaches, tremors, lack of energy and skin rashes, as well as symptoms that affect their mood and thinking, like short term memory loss, trouble focusing, difficulty understanding information, anxiety and depression, and difficulties with social and emotional situations.
These are symptoms that can affect the way you look, think and feel, the way you get along with other people, and they can have an effect on your performance at work or school. Scientists have looked at the brains of people with PKU and they can actually see more abnormal changes in people who have had higher Phe levels over their lifetime.
Diet for life helps people with PKU be the best version of themselves.