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BUT DO THEY REALLY KNOW WHAT IT’S LIKE?

18/03/2019

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To many, PKU is just three letters. Many do not know it stands for Phenylketonuria, a rare inherited metabolic disorder. So when you begin to explain it means being on a lifelong, low protein diet, they think “Simple, you just don’t eat meat, right? You are vegetarian!”

And that’s where you step in and give that well-versed response, that it is much, much more than that! And when you’re done, you’re met with a puzzled face. Sound familiar?

Even to those who we share great amounts of time with; our friends, our family, our co-workers and even some of our treating medical professionals – knowledge of our low protein diet is just the tip of the iceberg. Do they really understand what it is really like to live and breathe such a restrictive dietary therapy every single day?

The Great Protein Challenge

The Great Protein Challenge (GPC), an initiative by the Metabolic Dietary Disorders Association (MDDA), gives them the opportunity – but just for one day. During the month of February, anyone can walk in the shoes of a person with PKU for a day and try to understand the importance, complexity and difficulty of managing the disorder. The GPC asks entrants to try to eat just 10 grams of protein in a day. This is a whole 4 grams more than my own allowance!

So, I put my brother Alessandro to the test……

Low Protein Planning

Admittedly, I did pre-plan everything Alessandro had to eat throughout the day; so already he was off to a significant advantage!  No real thinking needed. No scouring supermarket aisles for low protein foods. The all too familiar routine of liking the look of a product, picking it up, glancing at its protein content and swiftly returning it to the shelf; many, many times over. And after who knows how long, the clouds open up and you find a diamond amongst the rubble. Something you can actually eat!

Anyway – that’s what he didn’t have to do. Lucky him.

Instead, he sat down with me the night before his challenge and we planned his day’s food as below:


Taking PKU to Court

A bit of background about my brother. Alessandro is a criminal defence lawyer. His working GPC day involved a morning conference with a client, followed by a jam-packed day in court. How he was to manage juggling a low protein diet and a day in court would be interesting! 

Off he went – food in hand; naively excited for the day ahead. I felt nervous for him. I knew the challenges he was set out to face. But he didn’t….

  • How would he curb his 4 coffee-a-day habit when he couldn’t have milk?
  • Would he be able to find a suitable salad in the café close to court?
  • Would he feel hungry?

The Challenges of Sticking to a PKU or Low Protein Diet

All in all, the day didn’t quite go to plan. I’ll let my brother explain.

“The most difficult thing about the challenge was adapting to variables during my day. From what I understand, a daily diet for someone with PKU needs to be calculated (literally) and well-prepared. Getting caught up in a client conference or staying back at Court meant that I wasn’t able to get to eat lunch at my scheduled time. Dealing with missing lunch and re-arranging the times when I ate proved to be a lot more difficult than I thought.”

Even just grabbing his morning coffee saw him face temptations.

“I looked at everything in the display window and was registering in my mind all the things I could not eat! This extended to removing even milk from my usual morning coffee. Supermarkets I felt less restricted, but supermarkets are hard to come by in the city, especially ones with a wide range of PKU friendly options. “

His experience juggling all this with work.

“As a lawyer, your day can change at a moment’s notice. My day usually involves attending multiple court houses each day, attending various gaols and then returning to the office for client conferences and preparing for the next day’s cases.

The hardest part about being on a low protein diet would be meal-prepping for the day. Because your day is not fixed. Plans change for everyone.

I think the best way to overcome this would be being flexible in your approach and having the foresight to the best of your ability to know where you will be at certain points of the day and what food you might be able to find while you’re out for the day. “

Alessandro’s thoughts on what could make day-to-day life with a low protein diet easier

“Preparation, preparation, preparation! Knowing where I was going to be the next day, when I would have time to eat, what food I would be bringing to work and what I might be able to buy while I was out all made my day a lot less stressful and allowed me to focus on my day’s work. “

And his overall thoughts.

“My experience for the GPC really taught me how difficult and somewhat tiring it would be needing to contemplate and then prepare what and when I would be eating and drinking for every meal of my day, every single day of the week. Lack of accessibility to low protein food I think is the greatest difficulty. Even with meal prepping, plans change and things pop up during the day which can throw your whole schedule.

I enjoyed being able to put myself into my sister’s shoes who has PKU. I realised I knew very little about this until doing this challenge. It was truly a great experience. I really recommend it to anyone reading this!

After this Low Protein Challenge, a key message I would have to people living with an IEM is that what makes you different is what makes you special. You should be proud of everything you have achieved to date, it’s tough and I have a new-found appreciation for the amazing job you do. “ 

N.B. A patient with PKU also takes a special medical supplement daily, as their low protein diet is nutritionally incomplete. A PKU person would otherwise be at risk if they don’t.  Of course – for the purposes of the GPC, one day of eating like this is fine!

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