PKU (Phenylketonuria) is a genetically inherited inborn error of amino acid metabolism, specifically, the body’s inability to convert phenylalanine into tyrosine. It is diagnosed and treated from birth.

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Treatment involves a strict low-protein diet for life. Protein intake is typically limited to one-third of the normal adult intake. For example, some individuals are advised to consume no more than 10–15 grams of natural protein per day, and in some severe cases, as little as 5 grams daily. The rest of the required protein is provided through a synthetic protein formula, taken throughout the day before meals. This formula has a foul taste, and as a child, it often caused me to dry retch between meals.

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PKU is a rare genetic disorder—it cannot be caught or developed later in life. Approximately 450,000 people worldwide are affected, most of whom are children.

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The cost of managing the condition is very high, and in some countries, insurance does not cover the specialized medical foods produced by pharmaceutical companies. In Australia, if you miss your annual clinic check-up or if your blood test results are outside the required range, you are not eligible for financial assistance to manage your special dietary needs. Eligibility also requires that you regularly consume a percentage of pharmaceutical-made foods such as low-protein bread, milk, pasta, and biscuits as substitutes for regular high-protein foods, which are unsafe for individuals with PKU.