Phenylketonuria (PKU)

Feeding your possible with PKU

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If you have PKU, you’re not alone. Phenylketonuria, or PKU, is an inherited metabolic condition that affects about one in every 10,000 babies born in Australia, and one in 22,000 babies born in New Zealand. A simple genetic change means that people with PKU don’t produce enough of an enzyme called Phenylalanine hydroxylase (PAH), which is responsible for breaking down the amino acid Phenylalanine (Phe) in the protein that they eat. If people with PKU eat too much protein, Phe can build up in the body and cause problems. That’s why following a low protein diet is the way to reach your health potential and live your best life with PKU.

We call this “Feeding Your Possible”

Why should you feed your possible?

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.

Phenylketonuria (PKU)
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How is PKU diagnosed?

These days, all babies born in Australia and New Zealand are tested for PKU days after birth through the Newborn Screening Program. If high Phe levels are detected, more testing is done to confirm a PKU diagnosis. As soon as diagnosis is confirmed, a baby will start on a supplement to lower Phe levels. Starting diet and supplements early, and continuing through life is the best way to manage PKU.

How is PKU managed?

Everyone has specific and individual dietary needs, whether they have PKU or not, and reach their full potential by eating the food their bodies need. PKU is really no different. Many people in Australia and New Zealand living with PKU feed their possible by following an individualised diet that includes low protein food and a PKU nutritional supplement, keeping an eye on their Phe levels, and regularly checking in with their metabolic team. It’s still the gold standard in PKU management.

There are many ways you can feed your possible at Low Protein Connect. Get inspired by our low protein recipes, discover flavour and variety in the online store where you’ll find a wide range of PKU supplements and low protein foods, and take time out for your wellbeing with our low protein lifestyle tips.

Reference sources:

The Australian Society for Inborn Errors of Metabolism (ASIEM). The PKU Handbook. Available at: https://www.mdda.org.au/wp-content/uploads/2019/04/ASIEM_PKUHandbook.pdf. Accessed January 2021.

Schuett V. Off-Diet Young Adults With PKU: Lives In Danger. National PKU News. Available at: https://pkunews.org/off-diet-young-adults-with-pku-lives-in-danger/. Accessed January 2021.

National PKU Alliance (NPKUA). Returning to Diet: management tips & pointers from adults with PKU. Available at: https://www.npkua.org/Portals/0/PDFs/pku_adult_booklet.pdf. Accessed January 2021.

National PKU Alliance (NPKUA). Adults with PKU – PKU & The Brain. Available at: http://www.adultswithpku.org/PKU-and-Your-Health/PKU-The-Brain. Accessed January 2021.

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