Patient Power®
Get Email Alerts!
Health Topics
Phenylketonuria (PKU) Health Center
Health Center Home Audio Programs Videos Education Community International Sign up for...
Search by Keyword:
Search by Health Topic:
View all Health Topics >
Spring Survey Results 2012
<< Back to PKU Education Center

Protecting Your Brain from Phe Build-up

PROGRAM DETAILS:

For those living with PKU, unsafe levels of phenylalanine can affect brain development, cognitive function and in some cases, lead to mental retardation. What's a safe level for you or your loved one, since phe targets vary for each person? You’ll hear the answers from expert Dr. Susan Waisbren from Harvard University and Children's Hospital Boston as she joins Andrew to put into perspective the importance of protecting your brain from phe build up. Also joining the program are a 14-year-old and a 30-year-old with PKU, both with very different, but inspiring stories.PKU Clinic Locator

The program begins with Lauren’s story. She talks about growing up with PKU and how she maintained her phe levels at a good, not great, number. These levels reflected in her attitude and overall mood. When she started taking Kuvan, her levels smoothed out and her mother notes that she is noticeably less irritable and grumpy. You’ll also hear about Lauren’s Science Fair project that she based on her experience with PKU and Kuvan.

Another interesting patient, Gregg Schlosberg, shares his experience with being on diet for the first 3 years of his life, then going off until the age of 26. When Gregg was diagnosed, it was thought that just staying on diet at an early age was effective. Looking back, Gregg – who trains as a body builder – notes the anxiety and headaches he often suffered, especially after consuming large amounts of protein. Watch Gregg’s Powerful Patient video in the community section, here.

Dr. Susan Waisbren helps us to comprehend exactly what phe is and how it affects those with PKU. You'll hear about the psychological effects of phenylalanine and strategies for maintaining ideal levels. Dr. Waisbren provides information on how the paradigm has shifted for treating PKU in recent years, what the future holds for treatments and research and why she is optimistic. If you are looking for a better understanding of PKU and how phe works, this program is for you.

Get Email Updates:

Get updated automatically when new content about Phenylketonuria has been posted.
Privacy Policy
Phenylketonuria
EXPERTS & GUESTS:
Susan Waisbren, Ph.D. Susan Waisbren, Ph.D.
Psychologist, Children's Hospital Boston
Dr. Waisbren is Associate Professor of Psychology at Harvard Medical School's Department of Psychiatry, as well as Research Associate at the Children's Hospital in Boston. She is also a psychologist at the Clinic for Inborn Errors of Metabolism and Phenylketonuria in the Developmental Evaluation Clinic and the Division of Genetics at the Children's Hospital. Dr. Waisbren received her Ph.D. in... more >

Lauren Petrosh,
Teen Living Well with PKU
Lauren is a fourteen year old high school freshman. She was diagnosed with Phenylketonuria (PKU) when she was nineteen days old and has been on diet since that time. She shares a busy life with her parents, an older brother who does not have PKU, and two dachshund puppies. In addition to being an “A” student, Lauren has taken part... more >

Gregg Schlosberg,
30 Year-old with PKU
Gregg was diagnosed with PKU at birth and doctors advised his parents to keep him on special formula for the first three years of his life before incorporating regular foods to see how he would adjust. His mother thought he had “grown out of the PKU,” and at the age of three, began feeding him normal foods. Gregg experienced severe... more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Lauren's Story LISTEN
  3. Effects of a High Blood Phenylalanine Level LISTEN
  4. Gregg’s Story LISTEN
  5. Questions from Listeners LISTEN
  6. Medicines in Development LISTEN

RELATED LINKS: