Patient Power®
Get Email Alerts!
Health Topics
Phenylketonuria (PKU) Health Center
Health Center Home Audio Programs Videos Education Community International Sign up for... Conference Coverage
Search by Keyword:
Search by Health Topic:
View all Health Topics >

Introduction

Program: Living with PKU: Patient Approaches to the Management of PKU

Table of Contents

  1. Introduction LISTEN
  2. Sarah’s Story LISTEN
  3. Treatment Options LISTEN
  4. Listener Questions LISTEN
  5. Family Relationships LISTEN
  6. Looking Ahead LISTEN

<< Previous   1   2   3   4   5   6   Next >>

Andrew Schorr:

Hello and thank you for being with us once again for the third in our three part series, special edition series on PKU. I don’t think there has ever been a series of programs like this. I’m delighted to play some small role thanks to the team that has made it possible. Remember back on May 8th, so this has all gone pretty fast, we did a program in understanding PKU and the new treatment options, and if you haven’t heard that I urge you to read the transcript or hear the replay. That discussed the new world now that there’s the first approved drug, Kuvan, added to the medical foods and the formula to help people better manage their Phe levels for PKU, and then it was just on May 27th we did a program on the assistance programs to help all the people who need it get assistance in having access to Kuvan, and also as you heard there are also some new assistance for the medical food as well. So we’ve covered that, and we urge you to listen to that.

Today we’re going to talk about living with PKU and patient approaches to the management of PKU, and we have a wonderful array of guests. I want to introduce them to you. I’m really excited. So first of all let’s meet somebody who is living with PKU and actually flew from his home in Toronto. He’s just 21 years old, John Adams, Jr. flew down to make a presentation to the big biotechnology conference, an organization called BIO having their conference in San Diego, California, and John Adams spoke about how he has lived 21 years with PKU, and now with the help of biotechnology and the new drug Kuvan he is better than ever managing his Phe levels. John, thank you so much for being with us.

John Adams, Jr.:

Thank you so much for having me.

Andrew Schorr:

So you’re up on the 10th floor of a hotel. Your dad came with you, and it is really very much a family story managing PKU. So John Sr. is with us, and he is way down in the lobby. John Sr., thank you so much for being with us too.

John Adams:

This is a treat, thank you Andrew.

Andrew Schorr:

We are going to talk about the family issues, and of course as you go on with PKU it is a long-term relationship with a metabolic disorder expert. One of the people who has done that now for over 12 years is up the road from where the Adams’ gentlemen today in San Diego, up in UC Irvine, University of California Irvine, is Debra Hook who is a metabolic dietician. Debra it’s a journey isn’t it over many years as you work with little babies and families and teenagers when things can be difficult certainly with a special diet and then adults too. You work with all of them, right?

Ms. Hook:

I work with all ages. So I work with them once they are diagnosed as an infant, and I see them all the way through adulthood, and I like it because you get to see all the changes, and that they have different interests, different topics, different things that are important to them at various stages of their lives, and it makes it fun for me.

Andrew Schorr:

Well we are going to talk about that. So it is one big talk show in the PKU community worldwide today talking about living with PKU. Now someone who has been living for 37 years with it is Sarah Foster. Some people know Sarah Foster. She is very active on the Internet and in listservs, and she didn’t join us live, but she did very recently on tape. We’re going to hear from Sarah a couple of times along the way. She is very inspiring, and I’d like you to hear a little bit of her interview now.

<< Previous   1   2   3   4   5   6   Next >>