Lauren's PKU Story
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Hi, very nice video! If You want to join us or facebook, we have a forum called PKU YOUTH. It would be great if You join and share your experience with us. I am not responsive to kuvan, I have severe PKU, tolerance up to 360mg of phe a day (we don´t work with exchanges...) It´s really few.
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@Bluey4696 Yeah I have a mild one too. 32 exchanges a day. It's been a while since I've posted that, but I haven't done anything wrong since. I'm feeling pretty good about myself. Thanks for caring about me though.
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@margaret4life Wow Margeret that is really high! I'm lucky to have the very mild form of PKU. I can manage 20 exchanges a day while keeping levels of around 200. Try your best to get better Margaret, i really wish you luck with that and i'm sure you can get better at it!
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My name is margaret, I am from canada, I have PKU. I have a tough time with it, often getting high PHE levels back from doctors. My highest a whopping 1080. I try my best to make my way through life with my PKU and I'm getting better with it, but I know I'll always struggle a little. I can't seem to find a formula to work, and my doctors won't allow KUVAN. It's time for me to step up and be the big girl. I have to rely on myself.
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@dorkfish120 Really? Mmm.
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@a5c11char5et that's strange. I have classical PKU also, but Kuvan has helped me a lot!
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I wish I had teeth like that! Mine are like not that perfect!
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Great! My daughter is PKU too.
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I have PKU. It sucks.
MsRachelPKU 2 months ago 3
I have PKU and I'm almost 18 years old , i've never seen it as a downer. We're special :)
And now with Kuvan we can eat like anyone else, it's awesome!
Actually , i like having PKU. We're awesome!
victoriacarlson93 10 months ago