PKU and us

[xxkaychica]

I watched this video when you first posted it in 2009 and I always remebred it. Almost 3 years later I'm in a genetics class and im doing a project on PKU! thank you for this video :)

[michellehays]

@xxkaychica wow! Thx! What are you studying?

[Engelchen22710]

i live in the near of paderborn, bielefeld. in a little city. it calls gütersloh. ;)

i lived one and a have year bevore in frankfurt!!! :))) sooooooooo nice city!!!! i love the skyline!!!

(SORRY for my bad english!!! :/ )

[michellehays]

@Engelchen22710 how is it to have PKU in Germany? Is it hard to find food that suits your diet? How do you get your formula? What about low protein food? Where do you buy it? Does the medical insurance cover for the cost of all of this in Germany???

[ShutterbugW]

We Just learend that our son has PKU and he is now on a special formula at the NICU as he was also preature, since the change he has been more active and more alert a completely different baby .

[Engelchen22710]

i have PKU too! i live in germany.

[michellehays]

@Engelchen22710 where in Germany? I was there the whole summer. I was in Frankfurt, Berlin, Hannau, Gluckstadt, Eutin, Heidelberg and other places...

[kksunshine69]

I am 28 yrs old and I have one and a half children and my son does not have PKU, however I got one more to go. Hopefully this one does not. I would hate to put my child thru what I have gone thru in life. Kids get bullied, name called, teased. I was always treated different because I could not eat same snacks as my classmates. I hope times have changed since I was in school. If it were not for our low protein food (that tastes nasty!) we would be in a world of hurt. People dont understand!

[trl40]

 Your right people are always offering cheese, fish, or milk to me, they just dont understand and I love Fruity Pebbles

[crazywatergirl923]

PKU isn't rare. 1 in 10,000. I wouldn't really consider that rare

[unknownstars]

I Like this, a funny way of explaining of PKU. 1 of 3500 new born in Turkey diagnosed by PKU

[muah2babies]

I would luv a support group for my 3 year old.

[crazydx08]

Just want to thank you!! so much Because I have PKU Im 29 years old male and im in college and people dont know whats PKU is? Mostly some of the people are Idiot in Louisville Ky!! I try to explain to my teachers at college. what is PKU to them and they think Im lie to them or make it up!! Just want to thank you again for make this video!! Take Care :)

[STEFAN0871]

HI MICHELLE OK... HOW MANY PEOPLE GET FED UP WITH HAVING TO EXPLAIN WHY YOU DONT EAT MEAT EVERY TIME YOU MAY GO OUT WITH FRIENDS... AND ANY TIME YOU EAT AROUND OTHER PEOPLE? I HAVE MODIFIED MY ANSWER TO ALL THE STUPID QUESTIONS I JUST SAY I HAVE A DIETARY ILLNESS. MY BODY DOES NOT PROCESS PROTEIN... MOST TIMES IT STOPS THERE THEN SOMETIMES A PERTSON ASKS ALL KINDS OF QUESTIONS... MY DINNER ENDS UP GETTING COLD.... DID YOU KNOW THAT I HAVE DEVELOPED AN OVERSION TO HOT MEALS. HEHEHEHEHE

[crazywatergirl923]

@STEFAN0871 I totally agree! I say I am vegan :)

[mellyjames1]

i loved it, you are so funny, i have pku, am 33 and deal with everything you mentioned on a daily basis, and the worst is dealing with other people.

[mellyjames1]

i loved it that is the funniest thing i've seen about pku, you nailed it, i am 33 and have pku and deal with exactly that on a daily basis, especially other people, wow, i loved it....awsome video...

[alanslytheprophet]

@mellyjames1

watch my pku vid

[mellyjames1]

i tell ya that is the funniest thing i've seen for pku, thankyou so much i have pku and you just said everything i deal with on a daily basis, especially when it comes to other people. i loved it...

[gongoozler18]

By the way, the "ke" in "phenylketonuria" is pronounced KEY.

[gongoozler18]

Why are your eyes dark? Tired?

[mrskezar]

WOW!!! In the 23 yrs of dealing with my PKU diet I have never heard Pheynlketonuria pronounced the way you do!!!!

[MissKate2204]

I have PKU myself too and you explain it so well :)

[PMMAMA]

Wonderful way of captivating and holding the attention of viewers!! Bravo for your way of handling this whole situation and enlightening the world in a humerous but educational way-you would make a great teacher!!

[PMMAMA]

@PMMAMA "humorous"......duh....Uh mis-pronounce a little, I mis-spell a little...lol!!

[IchigoDancerNyan]

How often does it happen to you (other PKU people) that you explain what you can't eat to people and they say this every time:

I'm so sorry! I could never live without... (chicken, milk, blah blah blah)

I mean, is the whole world a broken record or is it just me? :P

[sjameson15]

i didnt know anything about this and a friend of mine is doing a research thing on this. Ive learned a lot!! Funny video. Good job. Being silly makes it easier to learn!!! Awesome!

[HurleyGC2]

wow.. that basically describes my entire life in 7 min 21 sec. I HAAATTEE telling everyone exactly what i can eat and why i can't eat normal food. IT sux! Good work tho, its nice to know im not alone

[txwildcat60]

U know what Michelle, I can't pronounce it either and I have it. Classic Heh but can spell it! You child's sooo cute! Innocent!. Amazing description/information. Good video!!

[kittykitty20052006]

this was a random video i desided to watch...very informative..

[erinkman]

Great Video! I have a soon to be 5 year old with CPKU. Could not explained it this well to anyone! I have forwarded this video all my family and friends to help them "get it".

[spikerthebiker02]

WOW!!! I gotta say this is very very funny! I loved it! Not many people take the time to go out and make a video clip like this!! I've tried that diet goin on 20 years now! your right the food is very very VERY expensive! Your food list book looks very new compared to mine! haha no worries you learn to deal with it. it just becomes a routine. I still get them stupid questions daily. People think they got it rough?? HA!try living with PKU for 20 years! it gets way easier with time.

[johndshin]

WOW!! Thanks for this Wonderful Video of yours.. I am a nursing student too! and i like to say that millions of nursing student was inspired by this video. =) thanks...!!! GOD BLESS US!

[Corkym64]

I am in nursing school and we are learning about PKU right now. I must say, your video was very helpful!!! I got all of my diet questions correct. Thanks for your help.

[vonarx63]

starting to watch the video, I was not sure if I wanted to watch it all the way. Now I must say you´ve spoken out of my soul. My daugther has PKU and we are on a 5g diat and we expierience the very same kind of people woundering about our dauther´s protine disorder. She is 10 year old and we found ways not even to mention her eating limitations. Keep up your creative work and your support to your daughter.

Best regards from Switzerland

[Krystalitaaa]

THANK YOUUU.

my brother has pku so i know about it!!

im presenting something next week, because i want my biology class and biology teacher to know what it is. IM SICK &TIRED OF PEOPLE ASKING THE SAME QUESTIONS!!!!!!

"can he have chocolate? Can he eat beans?"

AHHHHH!! youre video is funny.

hope catie has good success in keeping up with the diet. peace.!<3

[minirampshreder]

i have this

[genkiserb]

Thank you so much for being creative about something that must have been not so easy to deal with. I admire your sense of humour and positive additude.

I have just received the news that my cousen's new born son has got PKU and I am naturally really worried. BABy is just few weeks old and my whole family is devastated.

I am sending them your video as I speak and I hope it will give them some strength to deal with it. Best wishes to you, and your child is beautiful, bless her!

[vstremer09]

you are making a video about your daughter and don't even correctly know how to say the word.

oh and i say this becuase im living with it and have been for 18 years along with my brother and sister.

get things straight before you decide to inform the whole world about PHEEEE NYL KEEET ON URIA!

[angelmeant2shine]

She actually won an award for this video - from a Rare Disease organization.

She already explained that she realized she was pronouncing it wrong. Read the info box in the right hand corner. Give the woman a break. Guess what? even though she doesn't HAVE PKU she is still living with it - in her daughter - as I am with my son.

[Ugfonyb]

you... are... funny!

[gasygurlys1290]

my bestfriend has PKU.

very informative. i learned alot. thanks.

[603killa08]

im one of the hand full of people with pku

[whalen1990]

Hahahah. Thank you so much for making this video. I will be forwarding it off to my friends. My little brother has PKU and it is very difficult to explain to people why he can only eat certain foods.

[DefeatADDnow]

awesome video

[dylanslater]

I LOVE THIS VIDEO!!!!!! You did such a great job! Very informative, and the stupid questions...........MUST be a common side effect of PKU, because I am sure that every PKU family goes through it!!! My son is now 9 and has PKU....he really liked your video as well....might actually show it to his class at school!!!!! Thanks again for taking the time for all of us to enjoy it!

[ColmenTse]

hey thanks helped me in my report a lot!

[sandrawhalen]

Michelle, wonderful video. My son, 13, has PKU too. You made me laugh when you talked about people's questions So many people think that fish or wild meat is protein free and are always asking me too. I just tell them, ANYTHING that comes from an animal is out. So when they ask about dairy foods...lol...I say..."comes from cows people!" Over the years I've learned that people aren't as informed as I am so I educated them. Keep up the positive spirit and the best to you and your family!!!

[Breamarie91]

This made me laugh :)

I should show this to my friends. They would get a kick out of it, because they enjoy trying to out-smart me on who knows more about PKU...let's be real of course I win. I'm the one with PKU haha!

Good job Michelle!

[2359f]

I am from Ireland and my daughter Ellen who is 17 is pku and she is on 4 (yes 4) units of protein a day. My name is Fiona and i am Ellen's mother and I love your video xx Fiona

[epsen2000]

He he - now I understand. It's always nice with a good explenation.

[ijustiniano]

Hi!

I know it's a nightmare. I've lived that with gluten. But we're lucky, because nowadays there're options people didn't have years ago. And you're double lucky, because you can reach this options!!! God bless your family.

[fctbria]

i agree your daughter is a beauitiful miracle from god... i have a 21 year old son..because of my high levels when i fell pregnant i was told by my doctor he would be retarded..God gave me a miricle too..a normal baby.

[fctbria]

i think you have done a great job explaining pku and the diet ...my freinds dont understand ..they say oh you can have a small amount of meat it wont hurt you they just dont get it ...

[michellehays]

my daughter was born in mexico and was not diagnosed till she was a year old. By then, I was feeding her all sorts of "normal" (high protein) stuff, and had seizures all day long. She was so sick and was slipping away from me. My little girl could hardly stay awake, and when she was, shesuffered a lot. At one year of age, she was developmentally a four month old- and STILL losing ground.

normal food = very dangerous stuff. But God gave her back to me. Look what a great miracle she is!

[fctbria]

i have had pku for 44 years..i agree with courtneyrae the pronunciation is off..

[michellehays]

you're right. Ive swapped the "O" and the "U"  I feel so stupid.

[courtneyrao]

Actually, the pronunciation is off :( Fennel-key-tone-uria. You're saying it in Italian hehehehehe--fenilchetonuria is the Italian word.

[michellehays]

oh my gosh! YOU are sooooo right. Geewiz. I feel like a dork. Oh well, not the first time Ive made a fool of myself.

[BeachMom1981]

Great job of explaining PKU while entertaining at the same time! Love it!