Yeah we do! When I first joined it was pretty active here…I could defintally tell my friends about it here. I know atleast five girls with PKU who I talk to on the computer and then atleast ten more I meet from camp…only problem for you is that you would be surrounded by girls . And I’m not sure how many of them would actually join and come here seeing as we talk through things like myspace and facebook.
Hi everyone. My name is Sarah and I am 40 with PKU. I was diagnosed at birth with PKU. I would love to chat with anyone older, younger, people going back on diet after being off for a while, parents of children with PKU, or anyone who just wants to chat about PKU.
Hi I just found out about this site. I have an almost 6 year old daughter who has PKU. We live in Hawaii and there are only a handful of patients here(less than 5 I think) we don’t have a lot of support. I am looking for a pen pal for her. She is starting to ask alot of questions about being different from her sister and dad and I. It would be nice for her to talk to someone with PKU. Thank YOu
My little sister Erica is 9 and she has PKU. I’m sure she’d be more then happy to chat with your daughter (through my email, since she doesn’t have one). nJust let me know if you want to do this and I can give you my email address. Are you on the PKU listserv? That’s a great way to meet others with PKU. nBreanna 16 CPKU
Hey everyone. I’m Missy. I joined this site a long time ago but forgot about it and now I’m back. I am 33 CPKU and have a little girl who is 10 1/2 months old and happy and very healthy. I’ve never been off of diet and never will go off unless they come up with a sure fire cure. Hope to get to know all of you.
My name is Jonathan and I’m looking for people to join an interactive club called GOT PKU? CLUB we offer things like mentoring trips educating the public improving food selections fundraising and much more
Hi My name is Heather and my Daughter is Brianne we found out she had pku when she had the new born screening done. She is 1 now for the first everything was great she only has low hyphe which i thought was really good, but now i am having alot of problems with her reading the side effects of pku about cranky babies, diaherra and a couple other things we have been having problems with her with this for about 2 mths now i dont know if it has to do with the pku or not the doctors to me dont seem to know what they are talking about neither anymore so if there is anyone who can maybe help me or direct me where i can find out more please let me know. thank you