Why PKU sucks.

Why PKU sucks.

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Why PKU sucks.

September 6, 2013 in Uncategorized

 10 things where having PKU sucks.1. No one and I mean no one can understand the basic logistics of it when I explain it to them. I knew this stuff at age 5.2.You have to constantly measure and weigh and look up values of food before putting a crumb in your frickin' mouth.3. You can't eat anything you want.4. People look at me like have 3 heads and one is on the precipice of falling off, when I tell them I have a genetic disorder.5. No one in my family understands what it is like.6. I have pale, pale, PALE skin that NEVER tans!!!7. If I ever decide to have kids it's gonna be one complicated process...sweet jesus.8. Bloodwork... that is like torture for the soul.9. Formula....I don't care how many weird, inventive ways you come up with to get this stuff down our throats...it will NEVER taste like the designated flavor.10. *enter your own in comments*

3 Reviews of Why PKU sucks.

  1. Registered: Dec 29, 2011

    Posts: 0

    Anacortes, Washington

    Hey! I just wanted to let you know at one point THESE THOUGHTS WERE MINE! It isnt fun to get the PKU thing under control and explaining it to someone without the issue is like speaking french to a Russian person. I get this completely! And I wish I could tell you that it gets easier… that isnt true… the only thing that gets easier as you age is that the understanding of the full effect that food has on your system becomes more clear. Decisions are still hard. Measuring everything is STILL tiedious and the formula still NEVER tastes good enough NOT to have to choke down. BUT when you get to the point of your life that your tired of being tired of the diet and start doing it just because that is what is… that is when the freedom from the diet comes. It doesnt go away but there is an acceptance of it that makes it much easier to handle and DO everyday. Yes the blood tests suck but at least we arent Diebetic! Your pale skin that doesnt tan may have nothing to do with PKU I am pale as well but tan pretty dark after I burn. The color of your skin is decided by a chemical called Melinin. Northern European people have less amounts of Melinin and therefore are and tend to be pale. Pku Is a Northern European trait. Thats not to say another ethnicity couldnt get PKU. But the not tanning issue your having is probably NOT the PKU !!! Its not fun I hear you! I agree! But ive also realized that this is the way I was put together and with out it Ide actually have no reason to contact you! Besides, when you talk about it I bet you sound hugely intelligent to whoever you talk about it to. Its hard theres no doubt, BUT YOU WERE MADE AMAZINGLY. So that you can reach and educate MANY.

  2. Registered: Jan 2, 2013

    Posts: 0

    Sacramento, California

    I totally agree with you

  3. Registered: Apr 17, 2011

    Posts: 0

    hesperiaNo Location

    i know exaclty how you feel it really sucks especially when you have to explain to your friends or when your at school.

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