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How to explain PKU to friends

Helpful explanations of PKU

  • PKU is a genetic condition. It is not contagious.
  • Apart from needing a special diet, a person with PKU is healthy.
  • People with PKU cannot break down an amino acid called phenylalanine or Phe, which is found in all foods containing protein.
  • Phe can build up in the blood and can affect the developing brain if levels are too high for too long.
  • Staying on a low protein diet keeps blood Phe levels within an acceptable range, allowing for normal development and wellbeing.
  • Eating foods high in protein will not make a person with PKU ‘sick’ (i.e. physically ill) but can result in mental and physical problems over time.
  • Having high-protein food that is not part of the diet should not be considered a ‘treat’ as it will have implications for an individual with PKU.
  • A person with PKU does not outgrow it and must stay on a restricted diet for life, which includes some special foods and drinks.

Please Note: The dietary management for PKU varies for each person so all information presented here is for guidance only. Your own dietitian and/or doctor will advise you on all aspects relating to management of PKU for you and your family.

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