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

PROGRAM DETAILS:

In this first program in Patient Power’s 2009 PKU series, guests discuss how to get access to the best care for you or a loved one. Joining Andrew for this program is Heather Bausell and Dr. Kevin Antshel. Ms. Bausell is a metabolic dietitian at Children’s Memorial Hospital in Chicago and Dr. Kevin Antshel is Assistant Professor of Psychiatry and Director of the Adult ADHD Treatment Program at SUNY - Upstate Medical University. Julie Kelly is a 27-year-old interior designer – she shares her story of growing up and transitioning to adulthood with PKU.

The program begins with Julie talking about what it was like to grow up with PKU in a time where the internet was not available as a resource. She speaks highly of the way her parents took proactive steps to access information and care for Julie and her brother, who also has PKU. Julie talks about the care she receives today, how she’s adjusted her lifestyle and why she thinks having PKU has benefitted her life as an adult – her story is truly inspiring.

Heather Bausell shares her knowledge on integrating a healthy diet into your life and tips for taking charge of your health. Dr. Kevin Antshel discusses the challenges of moving from parental care to self-care and other psychological factors associated with PKU. He expands on signs and symptoms of poor phe management and how this can affect social life. Listen to the program to understand the best treatment options, what “access to care” should mean to you and how you can find a provider that’s right for you.

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

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EXPERTS & GUESTS:
Kevin Antshel, Ph.D. Kevin Antshel, Ph.D.
Assistant Professor of Psychiatry and Behavioral Sciences, SUNY Upstate Medical University
Dr. Kevin Antshel is Assistant Professor of Psychiatry and Director of the Adult ADHD Treatment Program at SUNY - Upstate Medical University in Syracuse, NY. He received his Ph.D. from the University of Kentucky in 2000. Dr. Antshel went on to complete an internship at Boston University followed by a fellowship at Harvard Medical School. His clinical interests lie in... more >

Heather Bausell, R.D., L.D.N.
Registered Dietitian, Division of Clinical Nutrition & Genetics, Children's Memorial Hospital
Heather Bausell, R.D., L.D.N., is a Metabolic Dietitian and Study Coordinator at the Children’s Memorial Hospital in Chicago, Illinois. She conducts nutrition assessment and counseling for children and adults with metabolic disorders. Ms. Bausell received her bachelor of science degree in Dietetics from the University of Illinois, Champaign. She completed a Dietetic internship at the Medical University of South Carolina,... more >

Julie Kelly,
Adult Living with PKU
Julie Kelly is an adult with Classical PKU and has two brothers, one with PKU who currently lives in Washington D.C. and is in Law School and the other one without PKU lives in Colorado and is working on his Ph.D. in mechanical engineering. Julie and her brothers grew up in Albuquerque, New Mexico and were a part of about... more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Julie's Story LISTEN
  3. Managing PKU as an Adult LISTEN
  4. Signs and Symptoms of Poor Phe Management LISTEN
  5. Social and Relationship Challenges for Patients with PKU LISTEN
  6. Finding Quality Care LISTEN
  7. Preparing your Teen to Manage Their Care LISTEN
  8. Individualized Care to Manage Diet and Medications LISTEN
  9. Questions from Listeners LISTEN
  10. Closing Comments LISTEN

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