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International PKU Day

PKUOur dietitians are leaving their sandwiches at home for 24 hours to raise awareness of PKU.

Today is International PKU (Phenylketonuria) Day, a condition which means people with it can’t eat fish, dairy, meat, eggs and pulses and have to avoid food and drinks that contain aspartame, which can be found in many foods and drinks, even chewing gum.

People with PKU have a low protein diet with various nutritional supplements added such as powdered drinks and gels which our dietitians are copying for 24 hours.

PKU or Phenylketonuria is a rare metabolic and inherited disorder. Our bodies break down protein in foods like meat and fish into amino acids, which are the ‘building blocks’ of protein. People with PKU can’t break down the amino acid phenylalanine, which then builds up in the blood and brain and can lead to brain damage.

Alder Hey treat 55 children with PKU and 1 in 10,000 births are diagnosed with PKU

Living with PKU

James Williams - PKU

James is 11 years old and lives in Wirral. James has PKU and has to supplement his diet with specially formulated drinks. Despite this, James is incredibly active and positive and plays football and rugby.

When asked about living with PKU James said;

“I have PKU and I make sure I have my sachets of food. Apart from my meals it doesn’t really affect me as I play football and rugby. For anyone else with it, my advice is to just get on with it and be happy.”

Facts about PKU

  • PKU (Phenylketonuria) is a rare metabolic and inherited disorder
  • Our bodies break down protein in foods like meat and fish into amino acids, which are the “building blocks” of protein. These amino acids are then used to make our own proteins. Any amino acids that aren’t needed are broken down further and removed from the body.
  • People with PKU can’t break down the amino acid phenylalanine, which then builds up in the blood and brain. This can lead to brain damage.
  • People with PKU can’t eat fish, dairy, meat, eggs and pulses
  • People with PKU also have to avoid food and drinks that contain aspartame.
  • Aspartame can be found in many foods and drinks, even chewing gum
  • People with PKU have a low protein diet and special dietary supplements.
  • 1 in 10,000 births are diagnosed with PKU
  • 55 children attend the PKU clinic at Alder Hey
  • 4 babies a year are diagnosed with PKU at Alder Hey

To find out more about PKU click here

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