PKU directory - PKU information sources and services

Looking for a PKU specialist, dietitian or nutritionist, a supplier, or PKU association in your area? Discover them here.

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Facts

I’m planning a gap year with my best friend, who has Phenylketonuria (PKU). She hates any fuss being made about her disorder, but I’m worried that her wellbeing could become an issue while we’re away. We plan to visit some fairly remote parts of the world. Is there anything I should know about her disorder?

Ultimately her health is her responsibility, although you can provide encouragement

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I feel overwhelmed at times by the thought of having to manage my child’s treatment – of having to calculate Phenylalanine (Phe) in food and take blood samples at home. I’m not sure I can do it.

Caring for a child with Phenylketonuria (PKU) is a big challenge, but one you’ll

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Enjoying life with your newborn baby

PKU or Phenylketonuria is a rare, inherited disorder, which prevents the body from breaking down Phenylalanine (Phe), an amino acid found in food proteins. Without dietary management, the disorder leads to irreversible damage of the developing brain.
PKU or Phenylketonuria is a rare, inherited disorder, which prevents the body from breaking down Phenylalanine (Phe), an amino acid found in food proteins. Without dietary management, the disorder leads to irreversible damage of the developing brain.

Facts for newborn babies with PKU

PKU or Phenylketonuria is a rare, inherited disorder, which prevents the body from breaking down Phenylalanine (Phe), an amino acid found in food proteins. Without dietary management, the disorder leads to irreversible damage of the developing brain.

Currently there’s no cure for PKU, but there are solutions. With proper dietary management, children with PKU will develop normally and reach their full potential.

Breastfeeding is still possible, in combination with a special formula which does not contain Phenylalanine (Phe). Your PKU specialist, dietitian or nutritionist will be able to advise on the immediate changes required to manage your baby’s diet.

Confidence to manage your child’s dietary needs will grow as your understanding of the disorder develops over time as a family. Your dietitian or nutritionist will be there to help you achieve blood Phenylalanine (Phe) control.

Your PKU specialist will be able to answer any questions about your child’s long-term PKU management. Ask how Phenylalanine (Phe) targets can be met through a special diet.

Keeping your new baby healthy: what you should know about PKU

Learn about Phenylketonuria (PKU) and what can be done to help your baby reach his/her full potential through dietary control.

Also see Confirming a diagnosis and The science of PKU for a medical explanation of PKU and learn about the importance of blood Phenylalanine (Phe) level management by complying to a special diet.