Why we need non-diet treatments for PKU

The lifelong PKU diet is severely restricted. To follow the diet successfully, patients or carers need to devote extraordinary levels of time, nutritional and culinary skills to the task. It is typical for dietary adherence to significantly decrease from the teen years onwards. Amongst adults, the majority (79%) fail to keep their phenylalanine levels within the guidelines (Walter et al 2002).

The consequence of high phenylalanine levels can be severe. Well controlled patients have, on average, IQs that are 5 to 7 points lower than unaffected siblings.

In teens, failure to keep phenylalanine levels controlled slows brain processing speed. A range of psychological and psychiatric disturbances can also develop.

A diet that most find extremely difficult to follow cannot be regarded as a complete success. Non-diet treatments are needed so people with PKU can live healthy and fulfilled lives, reaching their full potential in education and employment.

NSPKU supports access to licensed, effective non-dietary treatments.