Family Matters
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PKU

I was wondering if anyone knows what PKU or Phenylketonuria is??

 

 

I have PKU and I know that my parents were not aware of what it was when I was born. I have started a blog to make people aware of how it affects me everyday.http://thedailystruggleofpku.blogspot.com/

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Re: PKU

  • Yes, I do. I recently wrote a paper on it for a class.
  • I cannot access your blog from where I am - but how old are you? If you don't mind my asking - it's now a routine test at birth.

  • Our state has screened newborns for PKU for quite some time.

    PKU is the inability to synthesize phenylketones -- I believe it's an amino acid. (soft drink bottles usually have "PKU free" stamped on them)
  • I am 20. When I was born the PKU test was optional in my state. It was an extra test that was quite expensive. At the time my parents didn't have health insurance and there was no family history to show that I was at risk, but they decided to have the test done anyways. 2 weeks later they found out I had PKU.
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  • My son of 5 months was diagnosed with Classic PKU at two weeks of age. I would love to talk to you more about PKU. It's so hard to find other people who even know anything about it, let alone are diagnosed with it. 

     

    Megan :-)

     

  • It is very hard to find someone with PKU and knows all the struggles people have with it. I was diagnosed at 2 weeks of age as well. I am now in my 20s and am still learning more about it. I will pm you my email. You can email me anytime!!
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  • Ok, maybe I won't pm you my email. I'm new at this and can't figure out how to message people. If you go to my blog, you can follow it and I believe I have my email up on there.
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