7 Questions People With PKU Hear All The Time | The Odyssey Online
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Health and Wellness

7 Questions People With PKU Hear All The Time

This is for the people forever explaining what the heck PKU is.

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7 Questions People With PKU Hear All The Time
med-health.net

My guess is that most of you reading this don't know what PKU is, or if you do, it's only because you've eaten lunch with me a few times and inevitably asked what's up with my weird meal. PKU, short for Phenylketonuria (try saying that five times fast), is a rare metabolic disorder. The lucky person diagnosed with PKU is missing the enzymes necessary to break down amino acids in protein, so as a result, they can't eat any protein. People with PKU have to follow a strict diet that avoids all meat, dairy, seafood, grains, poultry -- you get the idea. They eat mostly fruits and vegetables, and drink a special formula every day that provides the nutrients that is missing from their diet.

I know what you're thinking -- I feel bad for the poor soul who has to go through that.

Well, that poor soul is me.

I was diagnosed when I was about three days old and I'm here to tell you it's truly not that bad. It's an extremely manageable disorder, if you follow the diet.

However, other people are adamant. They are convinced I am miserable eating leafy greens and apples. Here are some other things people with PKU hear on a daily basis.

1. So you've never eaten meat?

Nope, never once in my life. To be honest, it looks gross to me anyway. I'm on the cows' side.


2. OMG what about pizza? You don't know what you're missing!

Okay, 1. That doesn't really make me feel any better, 2. I've never tried it, so I truly don't know what I'm missing. I'm definitely curious, but it doesn't keep me up at night.

3. Can you even go out to eat?

Yes, of course I can. Usually, I order some kind of salad and a plate of fries. It's actually a super delicious meal, please try it for me one day.

4. Can I try your formula? Would anything happen to me?

Nothing would happen to you, but try it at your own risk. It is nasty.

5. What would happen if you eat something you're not supposed to?

When I was younger, the protein would build up in the back of my brain and I could potentially become mentally handicapped. I'm now 22 and my brain is mostly developed, so I run less of a risk for having that happen. Instead, if I have a little too much protein, my coordination skills (like typing or walking) are effected and i get headaches. Basically it's like I'm drunk off protein. My friends say it's super fun to watch.


6. Can't you try a little piece of something? Like a bite of a burger or something?

Realistically, yes, I could without dire consequences -- but just think for one second. What if I end up LOVING whatever you're making me try? I could never really eat it again! That's a form of torture, my friend and i'm not buying into it.

7. Does the disorder bother you?

No. I'm still a 22 year old girl who goes out drinking with her friends, that goes out to eat with her family. I have a part time job, I have friends and a boyfriend, I have two dogs I'm mildly obsessed with. My life has not been radically effected and if we're being honest, I don't feel like I'd be myself if I didn't have this disorder. It's such a big part of me and my personality, it's hard to separate it from who I am as a person.


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