Explaining PKU to Friends

Friends can be a great source of support. Deciding to tell people that you have PKU is a personal decision. New friends won’t be able to tell that you have PKU, however they may notice your special diet and ask questions. Finding ways to explain PKU to friends can help you adjust to new situations and help people understand your condition.

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 treatment 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.