Why is it Important?

PKU is for life, when Phe levels are high or uncontrolled, symptoms can develop slowly and have lasting impacts on the brain, health and wellbeing.

A Phe-restricted diet is a proven therapy that improves outcomes for people with PKU by preventing severe brain damage BUT a Phe-restricted diet is not a cure for PKU.

After years of controversy, there now is nearly universal acceptance among clinicians that the diet needs to be continued indefinitely, and that adults with PKU who stopped the diet in childhood or beyond should return to the diet.

The research has told us that more than 70% of adults with PKU struggle to comply with diet. However, the PKU diet is the only tool that a PKU Adult has to control a range of serious yet common health issues.

Mental Health:

Anxiety, Panic Attacks, Depression

Psychosocial Issues:

Social Interactions, Coping Skills and Managing Stress, Lethargy

Co-Morbidities:

Asthma, Eczema, Obesity, Dental, Bone Mineral Density

Cognitive Functions:

Executive Function Issues with Memory, Concentration, Decision Making, Planning and Organisation

Neurological Problems:

Seizures, Tremors, Headaches

Statistics from the PKU Australian MDDA Quality of Life Survey

Socially its very restrictive. Either you can’t eat – but watch everyone else enjoying their meal, or you refuse to attend because it’s easier. The resulting depression and anxiety impact on social and work life as well as relationships with family, friends and works colleagues.

PKU Australian MDDA Quality of Life Survey

PKU is often associated with neuropsychiatric, behavioural and cognitive symptoms, but the full range of systemic co-morbidities associated with PKU and long-term exposure to elevated blood Phe are poorly understood. [ref]

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