My name is Paige, I’m 16 years old and I’ve never really met a whole lot of people my age with PKU. (besides my brother)I’d really like to hear about how other people are handling their diets and stuff like that.
well hi am kelly and i am 13 my diet is ok but i dont like takeing 80 tablets a day and hate the maxamade i hate not eating wat my mates eat wats your fav pku food and how u getting on????????
Hi I’m Breanna, I’m 15 and I have CPKU. Just like you Paigey I haven’t really met many people with pku besides a few teens at christmas parties at the childrens hospital where I live (but we didn’t really keep in touch). And my little sister (Erica is 7).
The diet is a pain in the butt sometimes and I just started drinking pkuexpress coolers and phenylade chocolate chews. Oh and my favorite low pro food would have to be wise eye onion rings or cambrooke tortillas.
Wow, that was a blank moment. I take phenex chocolate mint chews not phenylade chocolate…sorry
hi paigey my name is angela i am 16 and i live in wisconsin. i also have pku i dont get around much so i meet all my friends on here. breamarie is my friend. Arent you bre? shes friends with everyone. she lives in wisconsin too. but i know what your going through.
Lol…actually angela to tell you the truth I went to a halloween party and my 3 little sisters elementary today and one of my friends was there with her little sisters and I was bein nice to all the little kids and she was like ‘aww breanna…you could be their friends your even the right height’ and I was like ‘i’m everyones friend!’ (yeah i’m kinda short…like 5 ft)
Hi Paigy, nMy name is Kenneth, Im seventeen years old with Classical PKU, and live in Wyoming. Fortunately, Im not the only person in Wyoming that has this genetic disorder. Its becoming a more occuring disorder. When I was born, my phe level was 54! At the time they were just barely finding out what PKU even was. Fortunately, I was saved and diagnosed by the greatest doctors. I live about 100 miles southeast of Yellowstone National Park, and have to go to Denver, Colorado every six months for doctor appointments. I have been having weight trouble, as I only weigh 110 pounds and can lose up to a pound and a half over night. SCARY. I have been keeping it under control. In a few months, I will be tested on the PreKUnil pills that relax the diet, so that I can eat more of what I can’t. Thats in July. I’ve been keeping in touch with the people who are making the Home Testing Device for PKU. So far, it might be out in about a year. Well, there you go…. A little about me.
Yeah Kenneth I know what you mean when you say you have some weight issues. It’s the same for me, I’m like 5ft 1 or 2 and I weigh like 92 maybe 93 lbs. But the other factors to why I’m tiny is because I was 6 weeks premature, everyone on my dads side of the family is pretty small (so I guess you could say genes) and then of course not eatting meat and such has kept me pretty small. Plus on top of that I dance like 4 or 5 days a week. But besides that I seem to be pretty healthy so I really try not to worry much about that. nBreanna
please tell me what its like to be a teen with pku. i have a baby and i just wander do you look normal act normal is it hard. do ppl think its weird ? thanks heather
Heather, no we look and act just like anyone else. At first my friends thought it was alittle weird and kind of pityed me but when they realized I didn’t want to be friends for pity and I was just like them but I ate alittle different it doesn’t really matter much. So basically to answer your question your son will be like everyother kid in his school, he’ll just have to eat alittle different, most of my friends had no idea that I had PKU untill I either told them or they asked because I usually take the salad bar at lunch so they couldn’t even tell by what I ate. They only really started asking when I started bringing my PKUexpress coolers (my formula) to school. nBreanna
heather: does your child have PKU?, if so, there is nothing to worry about. i am (as crazy as it seems) happy to have PKU. Of course i am tempted to eat normal foods, and i absolutely hate my diet. But i don’t know any other way! it would be great if i could eat more, but i am old enough to accept that i am stuck with it, and to just deal with it. Most people don’t know that i have PKU and i tend to like it that way, (just b/c i dont like the questions) Also several times there have been people that try to persuade me to eat food i am not aloud. but i allways have said no, b/c i know the consequenses, and i am horrified of becoming addicted to something i am not aloud. When i was just born, the doctor told my mum not to expect much from me in school. i find that compleatly untrue, i am doing really well in school! my grades are better than most people’s in my year! -maddy
Lol, Maddy I totally agree with you. I’m almost a straight A student so I defintally say that I do better then some others at school. I used to absolutely hate telling others I had PKU because I really didn’t know how to answer the questions and I felt stupid when I answered then but now I really don’t care either way. If you ask I’ll answer but if you don’t then I won’t bother even mentioning it. nBreanna
In science when protein, amino acids, or enzyms ever come up, i feel really angry for some reason. i think it’s b/c other people don’t understand how hard it is for those subjects to be such a great influence in one;s life. it’s hard.
Yeah well in Biology we started talking about genetic disorders and wouldn’t know know it, the first genetic disorder in the book is Phenylketonuria, I got so mad at my teacher because he kept saying it totally wrong. He sounded like he had something in his throat everytime he said it becuase he said that’s how it was said and I kind of got really mad at him after class. and now I kind of feel bad, but then again he is a biology teacher so he should know basically what he’s talking about and it makes me mad that he doesn’t.
did he announce to the whole class that you have it? my bio teacher did that to me a while ago, i just sank lower and lower into my chair. it was weird, you could tell everyone was listening to her b/c for once there was dead scilence. i swear i was bright red! we’re doing genetic disorders later this year, im kinda looking towards it, (i actually enjoy genetics, though science in general frustrated me unless it’s about humans)but another part of my is dreading it!