PKU Adults: A Mythical Being

 I was scrolling through Facebook the other day when I came across this:

http://adultswithpku.org/Home.aspx

It's a website, put out by the NPKUA (National PKU Alliance) for Adults with PKU!!!!

I'm sure all of you are just sitting back thinking, "Yay.  So what?"  I don't think you understand, how monumental this is for me as a PKU'er.  

It feels like for the first time, they are recognizing that there are adults who have PKU.  Until, I attended PKU Camp, I had never met an Adult PKU'er.  In fact, I had barely interacted with PKU'ers my own age.  If it wasn't for Camp PHEver, I wouldn't have met a PKU Adult until I was one myself.  
 Before then, Adults PKU'ers were a thing of myth to me.  I knew I was going to have PKU my entire life, but only because the doctors told me that was the case.  I didn't have an example to look up to.  

But, I talked a lot about that earlier (see May 2014 entitled: What every child needs).

As an Adult PKU'er myself, I still haven't met a lot of PKU Adults.   Most of the activities held in my are are for young children.  For a while, it felt like once you turned 18 you were cut off from any social interactions with other PKU'ers.

Most of the things I know about PKU I've either googled, asked my dietician, or experienced myself.

But this website changes things!

Nationally, they are recognizing that PKU Adults exist.  It's a source of information for whatever questions you may have.  There's a forum.  (Just, don't be one of those lunatics who get into some dumb argument over something that's your own opinion.)  It talks about insurance.  It has the latest PKU news on it.

There's a MENTOR PROGRAM FOR Maternal PKU!!!!  So that PKU ladies who want to be pregnant or are currently pregnant can get advice from ladies with PKU who already have been through it.     

This is exciting, because for the longest time I didn't know if I was going to be able to have kids.  I didn't know anyone who had been PKU and had kids.  But, now you can have someone who's been there and done that to help and support!

This website, at least to me, means that PKU Adults are finally being recognized.  PKU is a life-long life-style.  Back in the 80's (or so, it's not a solid fact) PKU'ers went off diet when they were a certain age.  There were no PKU Adults.  Now there are.  Because, now we know that PKU is for life.  And now, we are recognizing that they are there. 

PKU Adults are not mythical beings.  They are real!  And I am one of them.