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phenylketonuria

I'm sorry if I've posted in the wrong area, I just really wanted to know if anyone has phenylketonuria? (I've been googling god-knows-what and I've found this website)

I'm now 18, and I think I've coped well before. It's just that sometimes I feel like I'm the only teenager in the world who has it. I'd really like to know how it's affected other peoples lives. Have they ever felt negative about their diet? Do they prefer their lifestyle.

Sorry if you don't know what the hell I'm going on about, but if you want to know, Here's wikipedia.
Wow, this is turned really funny. Got me in fits of laughter

First of all, I am a guy.

Yes, that's right, a guy!:eek:

And like the person above said, I was googling and found this site. I knew about my condition since birth, and not just suddenly out of the blue OMG I GOT PHEYNYTHINGYMABOB!! (or Hypochondria as matt@internet nicely put it)

I just wanted to know if anyone else has it. If not, then no worries :cool:
nut_of_all_nuts
Wow, this is turned really funny. Got me in fits of laughter

First of all, I am a guy.

Yes, that's right, a guy!:eek:

And like the person above said, I was googling and found this site. I knew about my condition since birth, and not just suddenly out of the blue OMG I GOT PHEYNYTHINGYMABOB!!

I just wanted to know if anyone else has it. If not, then no worries :cool:


sorry *looks sheepish*. just put male in the little tickbox on your user cp and i will never again say that you dont have a penis.
nut_of_all_nuts
Wow, this is turned really funny. Got me in fits of laughter

First of all, I am a guy.

Yes, that's right, a guy!:eek:
I thought you were too. :confused: Wondered why they were both using 'she'.

I don't have it and don't know anyone who does have it, but then I've never heard the word before and if someone's told me they have it they could have been speaking Japanese for all I'd have understood. :biggrin: Sorry.
Reply 4
What stuff can you eat? Can you eat mycoprotein?
Reply 5
My cousin has it and when we were growing up he hated it. At easter when everyone stuffed their faces with chocolate he couldnt and hated being different at school. But now were both 19 and hes a really healthy eater compared to me because he is so used to being careful with what he eats.
Whenever we go to restaurants he makes a point of asking bout the food and ends up tellin them he has PKU and we always get special treatment.
Reply 6
I haven't heard of it before, but isn't phenylalanine a component of sweeteners, or something similar? It's interesting how the accumulation of it can cause your condition, but I suppose it normally might not be a problem because people can metabolize it. Anyway, ignore me! :p:

I hope it doesn't cause you too many problems, but there are normally support groups for conditions like this- perhaps your local GP might have been made aware of such groups, or a place where you can find out whether one exists?

Either way, it hope it doesn't affect you too much- but you seem to be coping very well. :smile:

*Edit*- Ooh! Go here- http://www.google.co.uk/search?hl=en&q=NSPKU&meta=. Lots of support groups. :smile:
Thank you suuuuuuseh for your link. Fortunately, I already know them, but the forums is not really as active as these ones (Everytime I refresh in about a second there is a new post). But thank you anyways for your post.

To answer your question, phenylalanine is used in sweetners, and what PKU is, is simply when someone is born with the protein enzymes that break down phenylalanine is either inactive or just a lack of it.

I don't have many problems with it, I try not to make it a problem, and just get along fine! It was harder when I was about 13-16 because I turned skinny and I couldn't really put on weight, but I have now.

to katie_0201, that was really great to know someone else has it. You really made my day. I can see a lot of similarities with you and your cousin with me and my family. I wanted to see if anyone else had pretty much went through the same sort of thing I went through. If your cousin had to take these Maximaid supplements and hated them, you can tell him he isn't alone. I had those before and they were horrible. Couldn't stop vomiting :mad:!

Thanks everyone who has posted something!
Reply 8
I never knew that before. :smile: Good luck with it in the future!
Why've I been deleted? I did apologise for not reading the post correctly.