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I have PKU Im 13 and hate it, I hate being different all my friends ask why i have odd things in my lunch and i take it the wrong way :(

GabzEmzNic123 1 week ago

My mom said that I was the first one in USA to eat Kuvan. Is this true??

ASFDGGJHLD 3 weeks ago

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.

dementiapraecoz 2 months ago

I have PKU. It sucks.

MsRachelPKU 3 months ago 4

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.

margaret4life 9 months ago

@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!

Bluey4696 8 months ago

@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.

margaret4life 8 months ago

I wish I had teeth like that! Mine are like not that perfect!

TheAboutShow 11 months ago

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 11 months ago

Great! My daughter is PKU too.

libinmed 1 year ago

Great video! There is a newer PKU video surfacing on youtube called "PK-Who" which follows the lives of both treated and untreated PKU's. It's a pretty powerful comparison.

jannabobable 1 year ago

@minirampshredder

I have classic PKU, my consultant advice me not to even bother taking Kuvan - he said (as andreamnichols mentioned earlier) that it was not effective for such patients. Therefore patients with classic PKU still have a hugely restricted diet.

A5c

a5c11char5et 1 year ago

@a5c11char5et that's strange. I have classical PKU also, but Kuvan has helped me a lot!

dorkfish120 11 months ago

@dorkfish120 Really? Mmm.

a5c11char5et 10 months ago

im luke i have pku. Kuvan didn't work for me =( but I'm glad its doing good for others =)

HurleyGC2 2 years ago

Great Job Lauren,

I also have PKU and live in the Netherlands an I'm 18 years old. It's great to see other patients handling it so well. I think that I'm not the only one who have days in which the Phe values are higher than normal. But I can live with the disease and that's the most important thing.

Renzzel7 2 years ago

pku is not that bad at all.i have it. my age (18)i play rugby and soccer. im average hieght 5'10 average above average wieght 77kg and go to the gym lik 4 days a week it only cause a few life style chages but there are so much worse things i get pissed off when i hear all these ppl complaining about its not goin to harm u if you stick to the diet the only thing i will say about it is i got eczema from having high levels recently but thats only there while u have high levels its goin away now

TheTomtomtim 2 years ago

Thanks Lauren, My 9 week old son has PKU great to see a teenager handling it so well. - Al (Australia)

sassafras89 2 years ago

im amber i have pku

itsamber01 2 years ago

i have pku and so does my sister from UK

babiieehhannah 2 years ago

i am from Fargo, ND and i have PKU.. i just had my PHE bumped up to 350 i could only have 200 not much but it's awsome.

Evouderkirk 2 years ago

I'm Karen and I have PKU and I'm from Belgium

22KarenB 2 years ago

i take 12 pills of kuvan in the moring

minirampshreder 2 years ago

For people with classic PKU (which you do not have) this drug is useless to them.,

andreamnichols 2 years ago

sorry i was replying to minirampshredder about kuvan.

andreamnichols 2 years ago

ok i have this, this is not that big of a deal i use to have less protien but now i get bh4 which lets me have 43 grams of portien now! I can't have like steak but i have can bread and stuff

minirampshreder 2 years ago