Not bashing at all. I love this idea. I have noticed not alot of people come here frequently though. Do people not know this site is available? I have wanted to talk to others with PKU for a long time. If there were more frequent discussions I would come here everyday!!!! A PKU chat would be awesome.
I know what you mean. i only stumbled across this site by chance.. am passing the info along though. Maybe it just need more of a proactive approach to getting members. Is there not one big database with all PKU people somwhere?
I just stumbled across this site to. I was bored out of my mind, googling random words and this site popped up. But then a few months later I went to PKU clinic and they did have a flier posted on a bulletin board for this website.
Same here everyone, I just came across this site,and now i am on alot. nLooking for the extra support,recipes,PKU friends. It is just so rare where i live. nAsotin Wa. POP:1100 people and the majority are kids. The Drs. that have met me are amazed at what WE have. Isn’t it great when you need to inform your Dietition as well as Family Dr. on what PKU nis. Seriously that is why i go back to Cali to see nDr. Koch. Take care, nTracie-PKU
Another part of it is though that a lot of us that are on the site are either students or parents with full-time jobs. I personally am a college student taking 5 classes, on a board, and am acting in a production. Time just doesn’t allow this site haha. I wish I could get on here more.