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Spring Survey Results 2012

Closing Comments

Program: What is Quality PKU Care Today? And How Do You Get It for You or a Loved One?
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Andrew Schorr:

Heather I want to get a couple of final comments from everybody. Heather, very quickly from you, what should people expect out of a relationship with a PKU team whether they're a parent with a little kid, whether they're a teenager trying to take over some control, or whether they're an adult who is trying to continue PKU care or get back in PKU care, what should they expect?

Ms. Bausell:

That's a good question. I think when you come to a clinic you should expect just clear objectives and clear guidelines as far as how to be successful in your treatment whether you are a new family with a new baby or if you're an adult coming back onto diet. So I think it's important from your clinic to get just clear objectives and clear guidelines as far as how to be successful in your treatment whether it's with a diet or handling some of the cognitive concerns that you have or even just the social aspect of dealing with the diagnosis of PKU.

Andrew Schorr:

I want to thank you Heather for being with us a second time and maybe there will be a third and a fourth. I hope we get to do this a lot.

Dr. Kevin Antshel there at SUNY Upstate in Syracuse, so it's a journey really, and the issues may change not just by age but over time, right? It's a lifelong journey, and that's something that folks like you can help with a variety of times, right?

Dr. Antshel:

That's certainly the goal. So in terms of journey I think the expectations and the challenges change certainly across the lifespan. There are a lot of things, I've had patients with PKU really talk about the advantages of having PKU, and so there certainly are I think some pros that come with PKU, but again I think the point is "well-treated PKU." I think it's hard to imagine any advantages that come with poorly-treated PKU, but these things tend to change across the lifespan and certainly have the potential to adapt very well to any type of challenge that can come as long as the PKU is well controlled. I think that the concerns arise, we've talked about the different concerns at different age levels, but the concerns clearly arise in not well-treated PKU or poorly-treated PKU.

Andrew Schorr:

Right. I want to thank you for what you do in your study of it and helping parents, teenagers, adults with all these issues and what you do in the SUNY Upstate Medical University in Syracuse and your colleagues who specialize in this around the country. So Heather and Dr. Antshel, thank you so much. Julie I want to give the last word to you. So first of all while this is an uncommon condition, someone, a parent finds out now their child is diagnosed with PKU or a teenager is struggling trying to take on more responsibility but kind of angry about it or not sure what to do or an adult who's either not on diet, and we heard about some, or trying to do better, they are not alone, right?

Julie:

Oh absolutely. There are plenty of people out there who can help guide you and give you advice to find a path that works best for you, and obviously I highly recommend diet for life and finding a great clinic that can help you make diet become even easier and have all your questions answered and make sure that you're maintaining proper cognitive functioning, and there are lots of resources in every area, and if it's not that close it's definitely worth the drive.

Andrew Schorr:

Right, it is worth the drive. Thank you Julie for your devotion to helping others as well, and you're confident about the future right?

Julie:

Absolutely.

Andrew Schorr:

Okay, all right. Well this hour goes really fast, and we went a couple of minutes over. We have five more live programs coming up right? So the whole schedule is at www.patientpower.info/pku. I want to thank our guests tonight, Heather for being with us a second time, and we invite your comments. We're going to send out a little survey you'll get in a couple of days. You can always send us an e-mail. Believe me I read them, PKU@patientpower.info, and please tell others about it because this is an unmatched resource for people with PKU. I want to thank my whole team for helping put this series together and as always remember, knowledge can be the best medicine of all. I'm Andrew Schorr. Good night.

Please remember the opinions expressed on Patient Power are not necessarily the views of BioMarin, our partners, or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you'll get care that's most appropriate for you.

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