Looking after yourself: PKU treatment adherence

Years ago it was believed that Phenylalanine (Phe) control could end around the time secondary school began. The thinking was that the brain was only at risk from the toxic effects of too much Phe during early childhood when it undergoes most development. Then, doctors noticed that behaviour changed when people with Phenylketonuria (PKU) relaxed their diet. They developed trembling and weak legs, headaches and skin rashes. They were less able to control their emotions and found it more difficult to concentrate on their studies and plan their lives.

Not only that, but brain scans using magnetic resonance imaging (MRI) show changes in the brain when Phe levels in the blood are high. The long term effect of these changes isn’t known, although they seem to reverse when blood Phe levels are lowered.  

What that means, is that your body needs the protection of a dietary and treatment plan for life. High blood levels of Phenylalanine (Phe) will always present a risk to your brain, which continues to develop. People who come back to their special PKU diet feel better. They have more energy to party and do sport. They also think more clearly; their concentration and memory improves when they’re doing study or exams. Getting along with friends comes more easily and life flows at a more relaxed pace.