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How Does PKU Affect You and Your Relationships?

PROGRAM DETAILS:

Most people don’t know what PKU is. This can make it difficult to deal with in social situations, at school, or on the job. What is the best way to explain PKU to new people in your life? Whether it is with teachers, other parents hosting a birthday party, or, in later years, with dating or in the workplace, this Special Edition program will give you guidance and answer your questions. A psychologist and a dietitian join Andrew for a full interactive discussion on how to manage PKU and your relationships. From these experts, you’ll learn how to deal with the moods and emotions of your everyday life, while not letting PKU get in the way.

The program begins with Michelle Brandon, a 21-year-old college student living with PKU. She talks about her relationships, and how she explains PKU when she meets new people. Michelle has never really let her PKU bother her, and she really likes to think of it as being health conscious. Michelle’s advice to others, “It’s just you’re eating healthy, and it’s something positive. It’s definitely not something negative by any means. So my advice to them is just think as though the glass is half full at all times, it’s not empty, and that’s just the right attitude to take on it, and that’s it.”

Mary Niewinski, a nutrition specialist from the University of Illinois Medical Center and Dr. Jennifer Gentile, a psychologist from Children's Hospital Boston, share their expertise with the audience. Ms. Niewinski provides comments and tips for addressing food issues in social situations such as birthday parties and sleepovers. Dr. Gentile speaks about how social support, manageability and attitude are keys to success with PKU. Both experts address the mental and emotional effects of Phe levels that are not well-controlled, and answer questions from listeners. Support from family and friends is one of the most important aspects of managing PKU and your relationships, each guest can attest to this. This program is information-packed and loaded with strategies for success when dealing with PKU.

Click to here to view and print the Take Action Guide from this program.

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EXPERTS & GUESTS:
Mary Niewinski, R.D., M.S., L.D.
Nutrition Specialist, University of Illinois Medical Center
Mary Niewinski is a registered dietitian and has been a nutrition specialist in the department of metabolics and genetics at the University of Illinois at Chicago (UIC) for the past 15 years. She is also a clinical instructor in the Department of Kinesiology and Nutrition where she teaches nutrition courses to student dietitians. Ms. Niewinski is a member of the... more >

Jennifer Gentile, Psy.D.
Psychologist, Children's Hospital Boston
Dr. Jennifer Gentile is a Staff Psychologist at Children’s Hospital Boston and Instructor in Psychology at Harvard Medical School. She received her Doctor of Psychology from the Massachusetts School of Professional Psychology in Boston, Massachusetts and went on to complete a fellowship in the Department of Genetics at Children’s Hospital Boston of Harvard University. Dr. Gentile’s clinical and research interests... more >

Michelle Brandon,
College Student with PKU
Michelle Brandon was born with classic PKU. She has been on diet and drinking medical formula her whole life. Michelle currently lives in the suburbs of Chicago , where she is currently studying to earn a bachelor’s degree in nutrition. She feels that having PKU has positively impacted her life and has lead her to lead an active lifestyle. Michelle... more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Michelle's Story LISTEN
  3. A Dietician's Perspective LISTEN
  4. Strategies for Success LISTEN
  5. Questions from Listeners LISTEN
  6. Supporting your Family Member with PKU LISTEN
  7. Closing Comments LISTEN

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