PKU and us - WINNER of the Rare Disease Day 2009 VIDEO CONTEST!
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- čas přidán 26. 02. 2009
- A toddler must have a protein restricted diet due to the rare metabolic condition PKU. With this condition, protein becomes neurotoxic to the person. Without this extreme diet, the brain suffers severe damage in the first years of life, resulting in mental retardation.
The video is a very personal (and whacky) explanation of what I have to do as a mother of a child with PKU.
haha WOW... I am from Ireland... and my son has classical PKU... i am showing everyone this video... your outlook is so fun and light hearted, I love it and its SOO true!!!
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 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.
Thank you! My son has PKU, soi I understand, and laughed quite alot! Katy is a beautiful child, with a kick ass Mom!
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!
great video!!! thanks!! hope everything is going well for you and Katie :)
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!
finally! a video about pku! thank you so much! I have pku and I' so happy people are aware of this!
Just Awesome. Thanks Michelle. I am a nursing student and this video was great for learning and you had me laughing and feeling compassion for you and Katy.
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.
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.
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!!
so true I am soo glad because someone had to clear that up! thank you
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 CZcams 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.
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!!!
Love this!!! I have PKU and could relate to all that she said. So funny.
love this video I have HCU homocystinurea and live in ireland,I am involved in adult advisory board . mainly round food with nutricia . I am sharing this. with everyone brilliant!!;)
Loved this video!! Where is this woman from? Dose she have her own channel?
I love the video! My favorite part is the fish question...we get that one all the time!
How is she doing now? I am the carrier of this gene, but don't have it (or so I hope).
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:)
Still love this video, yay, hehe, yes i have PkU
I was diagnosed with pku when I was born but I'm grateful that it doesn't effect what I eat. Besides products with aspartame which is fine because aspartame is terrible for health.
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
my little brother has PKU. hes awesome.
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
Wow 14 years ago, me too have pku, im jason, atill love this video, hehe funny way to put , its, 😂
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...
I know! Im so stupid! In my defense, though, I had just moved back to the USA from Mexico, where Katy was diagnosed. We did everything in spanish, so when I translated it to english, I got the pronunciation all wrong... and like an idiot- I made a BIG emphasis on it. Too late, now. At least the information is out and people are learning...
Hehe,I like way she does it in a funny way,I have PKU too.after if seen her video.I under stand a little bit more what I have.and thank you,
I have pku and i really hate it i really really hate it!
i want to live without it
I thought that this video was very informative
Rick Lewis
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
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!
I HAVE PKU ITS A CONDITION NOT A DIEASE
I hate it when people call it a disease!
i have pku i no what shes going threw its not easy
@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 have PKU, im 17 and im fine! =D
sorry i just thought i should say that haha...
Ohhhhh then give her a protein shake 😄
OMG this video angers me soo much, it seems like you just want attention.
@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