Hello, My name is Kenneth and Im seventeen years old and have Classical PKU. I would like to here some stories of how YOU have educated the public of PKU and how you go about doing it. Thank you!
Hi Kenneth. My name’s Breanna and I’m 15 and have CPKU. Actually to tell you the truth until about a few years ago none of my friends ever really knew why I ate different or anything like that because at that time I never really felt comfortable telling them. But now basically all of my friends now atleast a handful of info about PKU and mostly that’s because in 9th grade we had to do a report in health on any genetic disorder we wanted and I did PKU and alot of people asked if I had PKU because they knew I ate different and so I told them yes. nBreanna
i am not a teen with pku but i am a teen mother with a baby with pku. i am just wandering how have you two turned out…. tell me all about yourself plz. thanks, heather <3
Well I’m 15 and the third out of 7 kids (yes we’re full siblings ). Also my 8 year old sister (the sixth of the bunch) has CPKU aswell. I (I and basically all teens with PKU) are just like others without PKU. I’m basically an A- or B+ student. I also do tap, jazz, ballet and pointe dance and I started when I was 3 so this is like maybe my 13th year. I also help teach younger childrens dance classes. I love to draw, paint, create things and all that art stuff (I’m best with my hands). If you want to know more about me then click my name and go to my profile. nBreanna
okay thanks !
OH and I absolutely love animals! We just got a new puppy around a month ago (her name is Tikki She’s a border collie mixe with something else and she’s 3 months) and I absolutely love her. The first thing I do ever day when I get home from school is play with her. nBreanna
My name is Kenneth. I am seventeen years old and I am a prosperous young man. I was diagnosed with PKU at three weeks, and I’ve been better than ever. All that really is required for a PKU baby to be great when they get older is to stay on diet. I’ve been on diet for seventeen years, and have come along with a few bumps in the road, but we were able to get through them. If you would like online help with your child or any more advice, visit my profile to receive my email and I will be more than happy to give you any kind of advice. Good luck in the future!
Hi, heatherfrazier- My name is Elizabeth and I am 19 years old and I am currently attending college. Unlike a number of other teens on this site, I am very science oriented. I am currently studying to become a Dietitan. I love my chemistry class that I’m in and I’m really looking forward to taking Nutrition classes. Don’t get me wrong though, I love to sing and dance! I have a younger brother who also has PKU and an older sister who does not. My brother and I have been on the PKU diets ever since we were born. If you have any other questions, I’d be happy to answer them. Hopefully my profile will be up soon.
Elizabeth, you want to be a dietian? I’m sort of looking to be the same thing (even though I’m 15 I have my heart set on a carrer). I want to become a peditrcian and then specialize in genetic disorders (but mostly PKU). This year biology has been slighlty hard for me but I’m determined to get an A!
That’s really cool! When I went to college, I had no idea what I wanted to do. Then I took some biology and chemistry and thought it was really interesting. That was when questions about PKU formed in my mind. Next semester, I’m really looking forward to taking some nutrition classes. And another nice thing about being around other students who are interested in science, like Pre-Med majors, when I tell them I have PKU they know exactly what I am talking about. And when I told my dietitian that I wanted to major in Nutrition Science, she was sooo excited!
Yeah that has to be pretty nice having people around you have atleast some understanding about PKU. At school it takes forever for me to explain PKU to my friends and even after i tell them they say, “So you can have meat though right?” Right after I just told them i couldn’t, and it’s annoying sometimes. but some of them understand.
to heatherfrazier…. ni just want to say first of all i think its AWESOME that you want to understand all you can about your baby’s condition…the best thing a PKU kid can have is good support ! I am 20 years old and in my second year nursing..soon to be an RN. My whole life my parents have taught me about the diet and there are still things im learning. My phe levels were always excellent right up to grade 12, but when i went away to university they got a little higher. still not bad, the nurses at the hospital werent too concerned. One of the hardest thigns for me growing up as im sure it is for a lot of PKU people was having to explain why i couldnt eat certain things. I went through a stage of just telling people i was allergic to lots of foods, or even that i was allergic to protein:P It wasnt that i was embarassed, i just was sick of explaining. Now i love explaining to people about PKU, some people are fascinated by it and i think you start to realize that as time goes on. I have a group of friends and we are all really tight, they all know about my PKU and even watch out for me saying things like “are you sure you should be eating that?” of “how much protein’s in that?” anyways i could go on for a while here but if you want to know anything else please ask !
I have to agree with Kimjones, even though it is still just a tad bit hard for me to explain it’s not nearly as hard as it was when I was maybe 10. I guess it has gotten easier because my friends are more understanding and interested and I know a whole lot more about my PKU then I did when I was littler. When I get older I actually want to become a peditrician and work with children in genetics (mainly PKU) so I guess in my near future PKU is going to become even more of a focus in my life so I’m just taking it one step at a time. And anyway to me PKU really isnt’ a big deal anymore, I just eat differently.
OH and this is alittle off topic but I’m soooo happy, I know because I’m 15 this is probably alittle later then most of you started this. But anyway we did bloodtests on Monday and for the first time I did my bloodtest on my own, and I know alot of you might of started doing this alot earlier but for me (since I absolutely hate needles) I think this is a huge improvement. It took me like 45 minutes or something like that before I did it but I did it all the same!
ahhhhh good for you!!! i remember when i still had to go to the hospital for my bloodtests…its just so much easier doin them yourself eh?!
Well we have always done the blood tests at home but usually my mom does them for me. Since we mailed then in on Tuesday night we should know what me and my sisters levels were by tomorrow, so I’m hoping they’re good!