Explaining PKU: In 3 Different Ways

How does one accurately describe PKU without misleading people?  How does one brush off the subject, because they have somewhere to be?  How does one give enough information without making the listener's head explode? 

In general, what does one say when someone asks about it?

This is a problem that I'm fairly confidant every PKU'er has pondered.  (And if not they are now.)

Well, how much time do you have?  And how well do you know them?  (Imagine giving the person next to you on the bus a detailed explanation.)  And how interested are they really?  (What if they ask just to be polite?)

Here are 3 different ways to describe PKU going from general to detailed. 

1. PKU For That Total Stranger On The Bus
• Phenylketonuria just means I have to be on a low protein diet.  (And beans and soy and tofu are still high in protein!)
2. PKU For Polite (but Clueless) Friends
• Phenylketonuria is a genetic disorder where I can't digest proteins as fast as other people, and the excess proteins block my brain synapses.  What it basically means for me is that I have to limit my protein intake with a special diet.  I count how much protein I get a day, just like some people count calories.  I just stay in a range of _______ (equivalents, mg, however you count it) and I'm fine.  :)     
3. PKU for PKU Enthusiasts (that may or may not be out there)
• Phenylketonuria is a genetic disorder where my body can't digest a certain amino acid: phenylalanine.  (Amino acids are the building blocks of protein.) Phenylalanine is used to make Tyrosine, which is very important.  That's why I drink my (insert whatever you call your formula here).  It gives me the tyrosine that I need, as well as other nutrients that I don't get because I'm on a low-protein diet.  I need to be on a low protein diet because the phenylalanine (as it builds up) leads to high Phe levels in the bloodstream.  Which leads to problems with thinking and behavior.  That's the reason why I need to get  my blood tested frequently.  So I can adjust my Phe intake as I live.  If I go off-diet it can lead to brain damage.  Which is pretty scary so I want to stay on diet.  But thanks for listening and thanks for really caring about my diet.  It really means a lot to me to have someone who really wants to understand. 

There!  Now you have a way to describe PKU in most situations.  :)  And worst comes to worse, and they just don't understand... tell them to google it.  OR EVEN BETTER!  Give them my blog address!  They can read this and problem solved. 

I was just reading back and I really like that PKU Enthusiasts reply... now all I need is for someone who knows nothing about PKU but really wants to know everything about it to come up and talk to me.  Haha.  :) 

Anyways, have a good week.  And be happy knowing you have a ready made speech for the next person who asks about PKU.  :)  Smile!