Australians are being urged to give up protein-rich foods like meat, eggs and dairy for 24 hours to support those living with the rare yet debilitating genetic disease phenylketonuria or PKU.
PKU occurs when liver cells are unable to break down an amino acid called phenylalanine (Phe) – found in most foods.
For the estimated 1601 Australians currently living with PKU, which is diagnosed in one in every 15,000 newborn babies, this means adhering to a very strict diet to avoid potential brain damage caused by a build-up of toxic protein levels in the bloodstream.
Monique Cooper, President of the Metabolic Dietary Disorder Association says this can be extremely restrictive for those living with the disease and they need more support.
“Imagine being a hungry teenager and your daily limit of protein is equivalent to only two slices of bread,” said Ms Cooper.
“For people with PKU, this means a diet restricted to consuming between 1-8 grams of protein a day. This compares to 46-64 grams of protein a day for people without PKU. This can be extremely restrictive, limiting and costly for Australian PKU families.”
An initiative of the MDDA, ‘The Great Protein Challenge: How Low Pro Can You Go?’ aims to encourage everyday Australians to experience a typical day in the life of a person living with PKU by significantly reducing their protein intake for 24 hours.
All money made through donations during the month of February will go towards research and helping sufferers access better treatment.
“Although people with PKU in other parts of the world have access to the only prescription medicine available to treat the condition, Australians with PKU are still not able to get subsidised access to this treatment,” said Ms Cooper.
“I urge anyone, young or old – whether you are a politician, a high-profile personality, or a member of the community – to show Australia how low pro you can go this February to support those living with PKU.”
The Great Protein Challenge will conclude on Rare Disease Day on February 28.
To learn more about the initiative or make a donation people can visit www.thegreatproteinchallenge.com.au
Originally published in the Herald Sun – http://online.isentialink.com/heraldsun.com.au/2018/02/06/4ac14493-bbcf-4cf9-b31d-8c10c58734c5.html