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Living with PKU: Patient Approaches to the Management of PKU

PROGRAM DETAILS:

In this Patient Power Special Edition PKU program, Debra Hook, a metabolic dietician, joins host Andrew Schorr to discuss strategies to live well with the rare genetic condition, phenylketonuria (PKU). John Adams and his 21-year-old son, John Jr. who has PKU, share their story with Andrew as well. You’ll also hear from Sarah Foster, a 37-year-old living with PKU. This program helps us to understand how planning, preparation and some simple strategies make it easy to stay on a Phe-restricted diet.

The program begins with Sarah’s story. She speaks candidly about the trials and tribulations of growing up with PKU. Over time, Sarah developed ways of dealing with PKU to make her life easier, and today she provides that same support and encouragement to others with PKU through a website, www.PKUworldlink.org.

John Adams, Jr. shares his story and the challenges he faced as a teen, active in sports. He often had trouble obtaining enough calories to maintain his energy level. Learn how he managed his PKU while continuing with his active lifestyle. John and his father talk about how he’s doing now, especially with the addition of KUVAN.

Debra Hook provides valuable insight to listeners as she stresses the importance of communicating with your healthcare team. She answers a variety of listener questions about PKU, ranging from how to test your phe-level and the phe-content in certain foods to how PKU affects one during pregnancy/conception. If you are looking for credible information on PKU, and tips for living well with this condition, this program is a must-listen.

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EXPERTS & GUESTS:
Debra Hook,
Metabolic Dietitian, University of California Irvine Medical Center
Debra is a pediatric dietitian that specializes in inborn errors of metabolism. She has been working in this area for over 12 years. Currently she works at University of California, Irvine as a dietitian as well as coordinate their metabolic team center. In her spare time, she teaches part time at California State University, San Bernardino. Many of her students... more >

John Adams,
Father of 21-year-old with PKU, President and CEO, Canadian PKU and Allied Disorders
John Adams is the father of a 21-year-old son whose PKU was diagnosed thanks to the modern miracle of newborn screening. He serves as the President & CEO of the Canadian PKU and Allied Disorders non-profit organization (CanPKU). CanPKU exists to help provide peer-to- peer family support, information sharing, research support, public education, and advocacy. Mr. Adams also volunteers as... more >

Sarah Foster,
37-year-old Living with PKU
Sarah Foster was diagnosed as a child with PKU. She is now 37-years-old living well with PKU. Sarah is a strong advocate in raising awareness in the PKU community and connecting with others for support. She maintains the website PKU World Link, www.pkuworldlink.org. more >

John Adams, Jr.
21-year-old diagnosed with PKU as a newborn
more >

TRANSCRIPT:

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

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