AS a 17-year-old girl, planning your day around diet and medication is not something most people would expect.
For young Mandurah woman Taylah Shier, it is reality.
Taylah is about to start her final year at school.
She also has PKU, or Phenylketonuria.
PKU is a debilitating and rare metabolic disorder estimated to impact one in every 15,000 babies in Australia.
The diet of those with PKU is restricted to just 1-8g of protein a day compared with 46-64g for those without PKU.
The Great Protein Challenge: How Low Can You Go? launched by the Metabolic Dietary Disorders Association encourages Australians to live a day in the life of those with PKU this month by significantly reducing their protein intake for 24 hours.
Ordinary food items such as meat, fish and eggs are just some of the foods that would be given up to raise awareness and funds for PKU.
The John Tonkin College student, who is in Canberra this week talking to politicians including Health Minister Greg Hunt about raising awareness of PKU, says her lifestyle is very different to a normal 17-year old.
She cannot eat from the school canteen, if her blood Phe levels are too high she is unable to focus at school and her Phe levels also impact her mood, making even social situations a challenge.
But Taylah is not letting that stop her.
She hopes to study medicine and is working with her school to make sure her PKU doesn’t impact her studies or her aspirations.
As a result of her PKU, Taylah often gets sick, up to 10 times each winter.
Taylah does her best to be a normal 17-year-old but even going for lunch with friends is a challenge as there are rarely low protein options available.
She also says a simple school camping trip would take an extra week of preparation to ensure she had everything necessary to manage her PKU and control her Phe levels.
Taylah said the Great Protein Challenge meant creating more awareness of the needs of those living with PKU.
She has been involved with Mandurah’s Estuary Guardians since its inception in 2016 and a keen cook, she is putting together a cookery book of low protein recipes.
Originally posted by The Mandurah Coastal Times – https://www.communitynews.com.au/mandurah-coastal-times/news/mandurah-student-taylah-shier-raises-awareness-of-pku-through-great-protein-challenge/