i know about PKU my unlce has it but he wasn't caugth in time so he is mentaly retardation and my cuzin has it but he is under control to the best as it can be and no we just found out my lil brother new baby has it...it runs in my family
Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit RemedyMD's website and click on the banner at the lower right
Oh my god, that mom is awesome. I wish my mom was as cool as that. I have PKU too, and well it pretty much sucks. Well sometimes it does, most of the time it's okay, but there are some really tough times. I hate getting questions like you can eat soy right? It's unbelieveable how little people know about what they consume. I am the person who jumps up and down in the grocery store like that mom when I find food I can eat. No wonder my dad won't take me shopping.
Ha you think you have it tough being her mom, just be there for her during high school when she starts feeling how much of a choke hold it actually has on her life.
Also my three absolute favourite questions I get from people are;
So can you have tofu?
What about soy!?
You must eat a lot of nuts right?
Restaurants are my favourite place to go! They don't make me realize how freaking terrible my choices are ever!
Or when your sister 'forgets' you have PKU and feed you a salad with nuts in it!
Seriously? She's going through a great deal of stress, and is using this as an outlet to release some of her anxiety, but also help others. Also, if you watch YouTube very much, she's using a common method of creating videos.
Thank you Mom for your info. I deal with Dercum's Disease daily, and I totally understand where you are coming from. I wish someone would post a video like this for us. Good for you for being strong for your beautiful daughter. She's a lucky little girl.
hi my name is heath and i live in texas i have pku and i know almost nothing about it i am 25yrs old and i have been trying to figure out what is what with this your video is about all i know about it and i havent been following any kind of diet ever and i need some help is there anything you can do for me or tell me please
hehehe nice video :) your funny personality will help me Ace my biochemistry test... and another thing to mention in the video... people with VERY(albino) light skin tend to have PKU (not all the time) because the disorder also interferer with the production of melanin :) and i saw your daughter ( BTW cute :D) and she has quite light skin :), and thanks for the video :D very informative ^_^
@iggy9211 hi my sister has PKU too and she lives a normal life. she does everything i do except when we are eating :) but even in the table, she has special products like special milk, special rice, special burgers, special cookies, special spagetti, special eggs, special cereals, special everything :D and shes fine with.
im telling you, some some of their cookies are really delicious ahah :D
@iggy9211 hi my sister has PKU too and she lives a normal life. she does everything i do except when we are eating :) but even in the table, she has special products like special milk, special rice, special burgers, special cookies, special spagetti, special eggs, special cereals, special everything :D and shes fine with it.
im telling you, some some of their cookies are really delicious ahah :D
I'm 28 and I have PKU - well done for raising awareness of the condition even though I must admit I think you are slightly crazy ;-) When I was your daughters age I was only allowed 2.5grams of protein so thank god for small favours huh ? :)
I have PKU and it is a rare disease! i read what the last post was and just because kids are tested for it doesn't mean it's not rare. In Norway where I am from we are only around 200 people with PKU and the number is higher other places due to different numbers of people living in that specific country. But I liked your video:)
PKU is one of the six diseases tested for every infant born in United States. So it is not so rare.
PKU can be treated with low PKU diet and medication Kuvan to augment or stimulate the enzyme phenylalanine hydroxyase.
She has never mentioned the cause of PKU is deficiency of phenylalanine and the results are mental retardation, seizure, microcephaly, mousy odor and hypopigmentation and requires low PKU diet, tyrosine supplementation and FDA approved Kuvan !
I have the same exact life as you - the same struggles, the same frustrations. My daughter has classic PKU, My daughter also takes Phenex, and the Low Protein Food list is my Bible! I too get sick of the "stupid questions" but keep answering them anyway all with a smile on my face for the sake of my daughter. Great video, I liked the humor you stuck in there. Keep hangin in there girl, and if you ever need to talk to someone who understands I'm here for ya.
I just want to say that you have a beautiful daughter. Until 1950-1954 no one knew what was that desease that causes a profound mental desease. The treatment started with doctor Bickel but lots of babies were dying in cause of breastfeading. So I think that Nowadays we should be greatfull to see a beautiful child, full of life, rather a sick children, with mental desease, that couldn't even get to 10, 20, most luckly 30 years of life! So I think that you're over reacting.
that desease is comun in Portugal, in Portugal we write: "Fenilcitenúria", and between 3 and 6 days of life they do the test call "the foot test" ( Teste do pézinho). unfortunatly is a metabolic desease, so it is very dificult to see is pregnacy. But it as a genetic charge, and comun in females.
Fun video and a good basic introduction for those who have never heard about it before. It's not completely accurate, like there are a lot of vegetables that are high in protein, and it's the blue packages, Nutrasweet/aspartame that has phe. I think the mom is great, I wish I had her sense of humor and her energy!
Well done with this video, a slightly humerous look at having a PKU child... yet we feel your frustration. I'm a 35 year old PKU, off diet since 13, only just being monitored again. I'm in the UK, they're not as strict on it all over here, you guys have a lot more knowledge about PKU! Oh and we pronounce it; 'feenalketonuria' &we put the emphasis at the end, on the 'ia' bit. ;-) Hope Katie goes on to have a great future, you seem to have it under control! My mum was great with it too.
I have PKU and wasn't diagnosed until I turned 3. When I was 2 my doctor told my parents that I would be lucky if I could wash windows at McDonald's for adult employment. Nobody had any hope for me, except for my parents. I am starting my sophomore year in high school fully included with supports. My mom believed in me and advocated for intensive services. She did everything to give me the best shot at a life and I learned to believe in myself.
Your child is not bad off, she has about 20 exchanges which, when I was her age I only had 6. It's not (fenyl-ketuu-noria, its feenal-keetone-newria) anyway, wait until your daughter is pregnant and has morning sickness, you think its hard now wait until she throws up the formula...
Very well explained!! I vaguely heard of phenyl-keto-nuria - this video is a plus to comprehend it- one thing is for sure, this kid will never get fat!! Veggies are great!! Only once in my life Ive heard about this condition through a student and a warning sign of a parent telling me that her child mustnt eat anything from any class birthday party whereas a birthday cake might be served so I looked it up to learn about it thanks for the refresher course!! Great video!!
I hate when people say your child will never get fat, Many people with PKu are obese because the lab made foods are so high in calories, were not vegans...
iam 16 and i have pku and the blood tests are annoying i do mine once a week and its painful but i still try to continue with everyday life not that its that easy but i try to sail down the middle and when i
Ha! I sure wish your very funny (and hey- very imformative) video around many years (ok decades) ago when my father was imersed in all things PKU & we kids had no clue what he was doing or saying. Now I'm amazed at the katies of the world- who are "intact" kids due to his newborn screening work & fight to prove it. My adult cousin with PKU was caught too late so her life is a different than Katie's will be- but even she benefited from the diet. when she was put back on diet..
This video was fantastic! I am 33 years old with PKU and have a 4 year old son (non PKU). I have heard a lot of ridiculous questions and comments! Thank you for letting people feel like they are not alone out there!
Ohhh and by the way it took me FOREVER to be able to say PKU right (yea I can't even spell but I can say it now) I love explaining what PKU is to ppl. I love showing ppl the warnings on the back of packages for PKU ppl. NO one ever pays attention to that but those with PKU or those who know ppl who have it and your getting it for them.
This video was HILARIOUS... I do not have PKU but my 2 nephews do. It was hard to understand at 1st when my sister told me my nephew had it. When I moved in with her for a few years I got the hang of what it was and what they was going through. All the blood tests they had to keep track of the levels. The food prices about knocked me over but I know its a GREAT thing for them. I ALSO LOOOOVE that book with the foods, it helped me a lot when it came to making sure I fed my nephews right.
Hey, my sister and I share this account so I'm posting from here. I'm 19, I have PKU, and I absolutely loved this video. I'm sitting here thinking, now why didn't I do this? Because seriously, I have to explain this all the time to friends who invite me over. They don't get it sometimes.
Thanks a bunch. Going to have to recommend this video to a few people.
Thank you for acting out the frustration I feel everytime I have to tell someone my husband (now 31) can not eat protein because he hase PKU. you are right... people do ask stupid questions
I'm 30 and have PKU, and the thing I hate most when explaining that I can't eat certain things to people, when I get to the milk and cheese stuff, they always says "So, you're lactose intolerant?"
Thank you for this video!!! I still can't say it without stuttering and my child with PKU is 3 now! And I've done that same thing with Fruity Pebbles, too!
uh I have PKU and I can tell you that it is NOT a disease as you have suggested in the title >:/
DisturbedPRODUCTI0NS 2 months ago
I thought that this video was very informative
Rick Lewis
Lewisrick9 3 months ago
i know about PKU my unlce has it but he wasn't caugth in time so he is mentaly retardation and my cuzin has it but he is under control to the best as it can be and no we just found out my lil brother new baby has it...it runs in my family
GMCboy1500 4 months ago
Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit RemedyMD's website and click on the banner at the lower right
. Good luck!
RareDiseaseContest 6 months ago
Oh my god, that mom is awesome. I wish my mom was as cool as that. I have PKU too, and well it pretty much sucks. Well sometimes it does, most of the time it's okay, but there are some really tough times. I hate getting questions like you can eat soy right? It's unbelieveable how little people know about what they consume. I am the person who jumps up and down in the grocery store like that mom when I find food I can eat. No wonder my dad won't take me shopping.
margaret4life 9 months ago
Ha you think you have it tough being her mom, just be there for her during high school when she starts feeling how much of a choke hold it actually has on her life.
Also my three absolute favourite questions I get from people are;
So can you have tofu?
What about soy!?
You must eat a lot of nuts right?
Restaurants are my favourite place to go! They don't make me realize how freaking terrible my choices are ever!
Or when your sister 'forgets' you have PKU and feed you a salad with nuts in it!
DruandSpike 9 months ago
Comment removed
Shreder158 10 months ago
Seriously? She's going through a great deal of stress, and is using this as an outlet to release some of her anxiety, but also help others. Also, if you watch YouTube very much, she's using a common method of creating videos.
Thank you Mom for your info. I deal with Dercum's Disease daily, and I totally understand where you are coming from. I wish someone would post a video like this for us. Good for you for being strong for your beautiful daughter. She's a lucky little girl.
SuperSport1966 11 months ago
OH GOD. This mum is a little bit crazy. I have PKU. And my mum is normal! xD This mum looks like SHE has a rare disease. More serious than PKU.
pidonek 11 months ago 2
I bet the mom is ADHD!!!. Good info but she annoys the hell out of me
csilva1112 11 months ago
my daughter is 7 and shes a twin but its just her not her brother shes normal and growing great
SexyJamiesGirl 1 year ago
Great explanation!!!!!!!!!!! thanks for posting it!!!
cushion25 1 year ago
hi my name is heath and i live in texas i have pku and i know almost nothing about it i am 25yrs old and i have been trying to figure out what is what with this your video is about all i know about it and i havent been following any kind of diet ever and i need some help is there anything you can do for me or tell me please
MrHad23 1 year ago
I have pku and i really hate it i really really hate it!
i want to live without it
killen151 1 year ago
Oh my god I love this video!! LOL! It is sooo funny! And so true with those stupid questions you are talking about! Great job!! Haha
bloemqueen 1 year ago
hehehe nice video :) your funny personality will help me Ace my biochemistry test... and another thing to mention in the video... people with VERY(albino) light skin tend to have PKU (not all the time) because the disorder also interferer with the production of melanin :) and i saw your daughter ( BTW cute :D) and she has quite light skin :), and thanks for the video :D very informative ^_^
Rozstripe 1 year ago
i have PKU, im 17 and im fine! =D
sorry i just thought i should say that haha...
iggy9211 1 year ago
@iggy9211 hi my sister has PKU too and she lives a normal life. she does everything i do except when we are eating :) but even in the table, she has special products like special milk, special rice, special burgers, special cookies, special spagetti, special eggs, special cereals, special everything :D and shes fine with.
im telling you, some some of their cookies are really delicious ahah :D
vanv4n 1 year ago
@iggy9211 hi my sister has PKU too and she lives a normal life. she does everything i do except when we are eating :) but even in the table, she has special products like special milk, special rice, special burgers, special cookies, special spagetti, special eggs, special cereals, special everything :D and shes fine with it.
im telling you, some some of their cookies are really delicious ahah :D
vanv4n 1 year ago
Nice video! There's a similar video on youtube that shows what happens if PKUs are NOT treated called "PK-who"
jannabobable 1 year ago
I'm 28 and I have PKU - well done for raising awareness of the condition even though I must admit I think you are slightly crazy ;-) When I was your daughters age I was only allowed 2.5grams of protein so thank god for small favours huh ? :)
a5c11char5et 1 year ago
I have PKU and it is a rare disease! i read what the last post was and just because kids are tested for it doesn't mean it's not rare. In Norway where I am from we are only around 200 people with PKU and the number is higher other places due to different numbers of people living in that specific country. But I liked your video:)
swayhips 1 year ago
PKU is one of the six diseases tested for every infant born in United States. So it is not so rare.
PKU can be treated with low PKU diet and medication Kuvan to augment or stimulate the enzyme phenylalanine hydroxyase.
She has never mentioned the cause of PKU is deficiency of phenylalanine and the results are mental retardation, seizure, microcephaly, mousy odor and hypopigmentation and requires low PKU diet, tyrosine supplementation and FDA approved Kuvan !
kanyuek 2 years ago
wow, what a brave mum you are. really liked the video, best pku vid I've seen here. I have a son with pku
dani1985 2 years ago
I have the same exact life as you - the same struggles, the same frustrations. My daughter has classic PKU, My daughter also takes Phenex, and the Low Protein Food list is my Bible! I too get sick of the "stupid questions" but keep answering them anyway all with a smile on my face for the sake of my daughter. Great video, I liked the humor you stuck in there. Keep hangin in there girl, and if you ever need to talk to someone who understands I'm here for ya.
andreamnichols 2 years ago
I just want to say that you have a beautiful daughter. Until 1950-1954 no one knew what was that desease that causes a profound mental desease. The treatment started with doctor Bickel but lots of babies were dying in cause of breastfeading. So I think that Nowadays we should be greatfull to see a beautiful child, full of life, rather a sick children, with mental desease, that couldn't even get to 10, 20, most luckly 30 years of life! So I think that you're over reacting.
carinamarley 2 years ago
that desease is comun in Portugal, in Portugal we write: "Fenilcitenúria", and between 3 and 6 days of life they do the test call "the foot test" ( Teste do pézinho). unfortunatly is a metabolic desease, so it is very dificult to see is pregnacy. But it as a genetic charge, and comun in females.
carinamarley 2 years ago
Fun video and a good basic introduction for those who have never heard about it before. It's not completely accurate, like there are a lot of vegetables that are high in protein, and it's the blue packages, Nutrasweet/aspartame that has phe. I think the mom is great, I wish I had her sense of humor and her energy!
OnlyHalfBlonde 2 years ago
Well done with this video, a slightly humerous look at having a PKU child... yet we feel your frustration. I'm a 35 year old PKU, off diet since 13, only just being monitored again. I'm in the UK, they're not as strict on it all over here, you guys have a lot more knowledge about PKU! Oh and we pronounce it; 'feenalketonuria' &we put the emphasis at the end, on the 'ia' bit. ;-) Hope Katie goes on to have a great future, you seem to have it under control! My mum was great with it too.
RetroGirl1974 2 years ago
I have PKU and wasn't diagnosed until I turned 3. When I was 2 my doctor told my parents that I would be lucky if I could wash windows at McDonald's for adult employment. Nobody had any hope for me, except for my parents. I am starting my sophomore year in high school fully included with supports. My mom believed in me and advocated for intensive services. She did everything to give me the best shot at a life and I learned to believe in myself.
Pilottyengi 2 years ago
i have pku i no what shes going threw its not easy
coltman1000 2 years ago
This comment has received too many negative votes show
OMG this video angers me soo much, it seems like you just want attention.
AsSweetAsether 2 years ago
Why did you watch it then??? I'm PKU and it's a very informative video for a lot of people...
RetroGirl1974 2 years ago
Your child is not bad off, she has about 20 exchanges which, when I was her age I only had 6. It's not (fenyl-ketuu-noria, its feenal-keetone-newria) anyway, wait until your daughter is pregnant and has morning sickness, you think its hard now wait until she throws up the formula...
*PKU at 25 and pregnant
AsSweetAsether 2 years ago
This comment has received too many negative votes show
my son has pku.. and i would rather him have pku than end up like her... she is soo annoying
pimpdaddystaples 2 years ago
Very well explained!! I vaguely heard of phenyl-keto-nuria - this video is a plus to comprehend it- one thing is for sure, this kid will never get fat!! Veggies are great!! Only once in my life Ive heard about this condition through a student and a warning sign of a parent telling me that her child mustnt eat anything from any class birthday party whereas a birthday cake might be served so I looked it up to learn about it thanks for the refresher course!! Great video!!
1Cyberangels 2 years ago
I hate when people say your child will never get fat, Many people with PKu are obese because the lab made foods are so high in calories, were not vegans...
AsSweetAsether 2 years ago
Fantastic!
jaschar00 2 years ago
iam 16 and i have pku and the blood tests are annoying i do mine once a week and its painful but i still try to continue with everyday life not that its that easy but i try to sail down the middle and when i
tabitha126 2 years ago
I love this video. I'm 17 and I have PKU and I'm definetly going to show it to all my friends so they understand better.
kbforeal 2 years ago
finally! a video about pku! thank you so much! I have pku and I' so happy people are aware of this!
cpopfanatic 2 years ago
my little brother has PKU. hes awesome.
snoplau 2 years ago
I love the video! My favorite part is the fish question...we get that one all the time!
vwheeler78 3 years ago
What a great video! I enjoyed your humor and appreciate your honesty! My eldest niece has PKU and we appreciate any info we can get!
beckyfehr 3 years ago
Amiga, me encanta este video =) jaja Creo que es el mejor tuyo y el de Kathy es cuando sale cantando... Ese me derrite el corazon.
gamalielatan 3 years ago
Ha! I sure wish your very funny (and hey- very imformative) video around many years (ok decades) ago when my father was imersed in all things PKU & we kids had no clue what he was doing or saying. Now I'm amazed at the katies of the world- who are "intact" kids due to his newborn screening work & fight to prove it. My adult cousin with PKU was caught too late so her life is a different than Katie's will be- but even she benefited from the diet. when she was put back on diet..
Go Katie!
sistahanne 3 years ago
This video was fantastic! I am 33 years old with PKU and have a 4 year old son (non PKU). I have heard a lot of ridiculous questions and comments! Thank you for letting people feel like they are not alone out there!
jenhaddadin 3 years ago
Ohhh and by the way it took me FOREVER to be able to say PKU right (yea I can't even spell but I can say it now) I love explaining what PKU is to ppl. I love showing ppl the warnings on the back of packages for PKU ppl. NO one ever pays attention to that but those with PKU or those who know ppl who have it and your getting it for them.
TangMoore33 3 years ago
This video was HILARIOUS... I do not have PKU but my 2 nephews do. It was hard to understand at 1st when my sister told me my nephew had it. When I moved in with her for a few years I got the hang of what it was and what they was going through. All the blood tests they had to keep track of the levels. The food prices about knocked me over but I know its a GREAT thing for them. I ALSO LOOOOVE that book with the foods, it helped me a lot when it came to making sure I fed my nephews right.
TangMoore33 3 years ago
Hey, my sister and I share this account so I'm posting from here. I'm 19, I have PKU, and I absolutely loved this video. I'm sitting here thinking, now why didn't I do this? Because seriously, I have to explain this all the time to friends who invite me over. They don't get it sometimes.
Thanks a bunch. Going to have to recommend this video to a few people.
CRGecko2007 3 years ago
Thank you for acting out the frustration I feel everytime I have to tell someone my husband (now 31) can not eat protein because he hase PKU. you are right... people do ask stupid questions
brandyladi 3 years ago
You rock. I really appreciated this video. I'm one of the stupid friends you were refering to. But you helped me!! :) Thanks!
debrarettberg 3 years ago
This is great !! I am 33, have PKU and 9 months pregnant.
I wish this was around when I was younger !!! Things have sure changed a lot!
careichle 3 years ago
I am 33 PKU and pregnant - close to delivery !!!
Do I wish this was around when I was younger !!!
careichle 3 years ago
Great video!
I'm 30 and have PKU, and the thing I hate most when explaining that I can't eat certain things to people, when I get to the milk and cheese stuff, they always says "So, you're lactose intolerant?"
grrrrr!!!
Myzery97 3 years ago
Thank you for this video!!! I still can't say it without stuttering and my child with PKU is 3 now! And I've done that same thing with Fruity Pebbles, too!
ShutterbugMama 3 years ago
Great job! I will be showing my sons this video. We are in Massachusetts, USA and our 14 year old has PKU.
rehgarde 3 years ago
Hi.. we are PKU since '92 so we hear ya on the diet! Cute video & say hi to Katie from Penn. SMILE
Octsky77 3 years ago