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Introduction

Program: Young Adults with PKU: Transitioning to Life on Your Own

Table of Contents

  1. Introduction LISTEN
  2. Kaitlyn’s Story LISTEN
  3. Setting the Stage for Success LISTEN
  4. Tips for Transition: Taking Control LISTEN
  5. Update: Breanna Hardy LISTEN
  6. Listener Questions LISTEN

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Andrew Schorr:

For those with PKU life transitions can present different challenges, and if you’re coming back into the clinic after many years of not managing your PKU, that can be a challenge too.  Coming up, leading experts and two inspiring young adult patients with PKU will share advice and tips for entering new stages of life.  It’s all next on this special edition of Patient Power. 

Hello and welcome to all of you around the world, and we are going around the world to this live special edition for folks who are concerned about PKU.  We’ve done close to 20 hours of programs now, a vast library you can all find at patientpower.info/PKU.  This program particularly will deal with the challenges that one faces when they’re really going out on their own and they’ve been living with approximate PKU, so typically young adults, but we’ll also talk about issues that could affect people who were treated years ago for PKU and then told, well, you don’t need any more treatment, which as you may know they used to say, and now you’re coming back into the clinic and you face the challenges of that transition.  We’re going to talk all about that. 

Now, as our announcer, Carleen, said, we welcome your questions, and I want to mention how you can ask questions because this is a live program.  You can call the studio directly, 877-808-6116. You can send an e-mail to pku@patientpower.info.  Now, some people may be connected with us already on the phone via a conference call, and if you are you just press Star 1.  If you’re already on the phone, just press Star 1.  All right. 

Let’s talk about this program.  So there you are, you’re a parent maybe and you have a young child, and you’re saying at some point this bird is going to leave the nest, but yet they have a life-long chronic condition.  How can I begin to help them take control so that they manage their diet, keep their Phe levels low, and we’re learning, many cases, that lower is better, right?  And so how do we get that to the optimal range, and how do they begin to take ownership of that, whether it’s just middle school, elementary school, high school or ultimately maybe college or just life on their own.  So this is a show for parents as well as someone who is already going through that transition.  We’re going to meet two young adults who have gone through it and are doing great. 

We’re also going to hear from a dietician who works with everybody in this age range from little babies and their parents all the way through to young adulthood and then continuing and then some people who are now coming back in the clinic after many years.  And we’re also going to meet a renowned neuropsychiatrist, and he helps families who are touched by some of these life-long conditions, help them when things are on track but also some strategies you’ll learn when things are not on track. 

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