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Protein disorder hard enough without battling bullies too

COULD you imagine going about everyday having to check every piece of food you put in your mouth - wondering, is this low enough in protein for me to consume?

Well, that is what I face every single day.

My name is Nicholla Kinscher, I'm 23 years old and I have phenylketonuria, or PKU as it is known to me.

PKU is a genetic disorder that affects one in 10,000 people.

People like me do not have the enzyme to break down the amino acid phenylalanine which is the main form of protein.

Nicholla Kinscher
Nicholla Kinscher

This amino acid when consumed will cause me and my PKU friends to have negative side effects such as depression, anxiety, foggy mind, sore stomach, weak muscles, osteoporosis and, at the worst, brain damage.

PKU means only eating a very small amount of protein every day, which for me is only five grams a day - that is the equivalent of one banana, a salad and a vegetable stir-fry or 1 large McDonalds fries.

It is a very limited food choice but it is also what keeps me healthy and keeps me from being, at worst, a vegetable.

May 1 is National PKU Day. This day is a day for people like me to feel like we have a community and a support group. This is the day we take pride in the life we've been given and be thankful that it isn't the end of the world. We drink a medicine, eat low protein foods and avoid anything that says "sugar free". 

National PKU Day is a day to raise awareness for our condition. It is not known to many people but it needs to be.

As a child, I was bullied, teased and ridiculed by most of my peers for having "a disease we could catch".

It wasn't like that. No one can catch PKU.

Many people looked at the foods I ate and thought it was disgusting.

To make matters worse, I was a redhead and a Christian: two things I got teased about as well.

Whilst not many people understood when I was younger, as I grew up people began to understand. Now, I have many friends and my husband who will defend my PKU, make sure I'm eating properly, drinking my medicine and doing regular blood tests to make sure my protein levels are in range.

I'm writing this article for kids with PKU not only on the Northern Rivers but across the country.

They deserve to have their condition known so that they won't be bullied by those who simply do not understand.

PKU does not define me, it is simply one small part of my everyday life.

Topics:  genetic disorder



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