Community Discussion Forum Generation PKU soooo…who wants 2 talk? Reply To: soooo…who wants 2 talk?

Avatar of Gemma_

I just wanted to say Hi! I’m here because my boyfriend has PKU, whan I met him he wasn’t on his diet, but he’s back on it now, and we’re just starting to get strict with exchanges again!
He’s about to start his 2nd year of University. He’s one of those annoying people that can get good grades without trying! He could be an evil genius if he could be bothered! But he can’t!
We don’t know anyone else with PKU, so it’s really cool to hear from you guys. I’ve joined the nspku forum, but it’s a bit rubbish! I agree with the observation that most of the information only regards kids and babies with PKU – it’d be helpful to hear more about young adults and how they’re coping, and their experiences.
I already notice little changes in Nat when he’s not sticking to his diet. At the moment his memory is pretty bad. When he slacks off the supplements he can’t sleep (and it’s a downward spiral from there). But how bad is he? Compared to other people? What will happen if his diet goes out the window this week? What kind of things will happen in the future?
We’re in the middle of changing dieticians. There’s rumours of a PKU specialist in Plymouth! Last night I read that people should be going to PKU clinic every 6-12 months – Nat just giggled when I pointed that one out! Hopefully the improvements we’re making will continue, and the new dietician won’t slap his wrists too much!
One last thing – what’s the best thing a PKU person’s girlfriend can do (PKU-wise!)? And what shouldn’t I do?

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