PKU adult Debbie Colyer interviews me about PKU in Australia

As a lot of you will already know thanks to Facebook, my good PKU adult friend Debbie Colyer has been staying with my husband and I in Melbourne for the last couple of days.

Having Debbie stay has been fantastic – we’ve had a real PKU fest and have had a lot of discussions about raising PKU awareness and fostering more of a sense of community amongst PKUers here in Australia. A big focus for our conversations has been the huge differences in support and even treatment between PKU clinics within Australia and also the issues facing PKU adults here in Australia. We’ve also done a bit of cooking, and I’ll post pictures and recipes in the coming days.

Last night was Debbie’s final night staying with us and she sat down with both Ed and I and interviewed us both about PKU. Debbie has been taking part in the Vodafone World of Difference program for the better part of the last year which has seen Debbie work full time for the New South Wales PKU Association. She has had the opportunity to learn a lot and has been to two major PKU conferences in the US, interviewing people linked in some way to PKU along the way.

I was thrilled Ed agreed to be interviewed by Debbie, though I did have to promise him that I wouldn’t get offended, angry or upset about anything he says – I meant it too, because I know how difficult I can be to live with and to love sometimes when I’m not as compliant with the diet as I should be. I’ll post that interview in the coming days as well, but in this post I have included a 25 minute long interview with me which discusses a lot of issues surrounding PKU in Australia. I hope you enjoy the interview (which I’ve had to split into three parts because of the length) and any feedback and input you’d like to provide would be really valuable to the exciting things we’re planning to do this year.

Part one:

Part two:

Part three:

Back to babies…

Er… the whole point of the below post was meant to be about how hard I’m finding it to even consider doing the preconception diet, but I got a bit carried away. I can’t really do my bloods (not effectively anyway), food is crappy (and what we do have is expensive), and I feel like I have no support at all.

That’s not the way it should be! And when women, or anyone really,  feel completely unsupported when it comes to having PKU, you know that something is majorly wrong with the system!

I want to have a baby, and I want my levels to be in range by the time my husband gets here from England, but I really, honestly don’t know if I can do it… and that scares me. I thought if I’d done the preconception diet successfully in England I’d be okay here and I could make do. It seems with the poor level of support (and knowledge!) from clinics and the mediocre range of low protein foods available (and treatments… why aren’t we getting Kuvan here?!?!?!?!), that I am really struggling.

I’m so afraid that I’ll never be able to get my levels down.