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Understanding PKU and New Treatment Options
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Phenylketonuria (PKU) is a serious, lifelong, inherited condition that requires constant attention from patients and families. The good news is, now more than ever, PKU is a treatable condition. In this Special Edition Patient Power series “Living with PKU” experts from around the country join Andrew to help listeners understand PKU and discuss treatment options available. You’ll hear from guests like, Gregory Enns, M.D., a pediatrician from Stanford University and the Lucille Packard Children’s Hospital who is an expert in genetic metabolic disorders; Susan Waisbren, Ph.D., a researcher and clinician from Harvard University and Children’s Hospital Boston; and Corinna Vonderwell, a savvy parent of two children with PKU from southern Indiana.
The program begins with Corinna by describing her life as a caregiver of two children with PKU. Corinna has 3 children, ages 9, 11 and 13, the 9-year-old and 13-year old have PKU. She talks about the initial diagnosis and discusses the challenges associated with PKU on a daily basis. Corinna stresses the importance of advocating for your children and how she feels about the tremendous breakthroughs in therapy.
According to the experts, this is an exciting time for families affected by PKU. In addition to managing diet, there’s an FDA approved medication to help lower Phe levels and it’s making a big difference for many. Dr. Enns provides a detailed clinical explanation of what PKU is. He also helps us understand the treatment options available including diet and the new FDA approved medication, Kuvan. Dr. Enns goes into detail about the different classifications of PKU and the importance of monitoring Phe levels.
Dr. Susan Waisbren offers her input from the perspective of a psychologist, with 30 years of experience. She provides insight on the outcomes associated with a strict diet, social support available and the importance of transitioning to adult care. Dr. Waisbren talks about the long-term impact of metabolic control and how it affects neurological development as PKU patients age.
In this very informative program, both doctors provide intelligent and thoughtful responses to listener questions. Both Dr. Waisbren and Dr. Enns provide a hopeful look into the future. Corinna closes the program with advice to others and hope for the future of those living with PKU. This program is a must-listen if you or someone you know is affected by PKU.
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Gregory Enns, M.D.
Associate Professor of Pediatrics; Director, Biochemical Genetics Program, Stanford University School of Medicine
Dr. Enns is Associate Professor of Pediatrics and Director of the Biochemical Genetics Program at Stanford University. He also serves as a clinician for patients with metabolic disorders, performs research on treating metabolic disorders, and he is director of the California Department of Health Services Newborn Screening Area Service Center for Northwestern California. Dr. Enns received training in clinical genetics...
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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...
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Corinna Vonderwell,
Mother of two children with PKU, Board Member, Indiana PKU and Allied Disorders Association
Corinna Vonderwell is the Coordinator for theTwenty-first Century Scholars Program for the State of Indiana at Vincennes University. She earned both a Bachelor of Science Degree in Organizational Management and a Master's Degree in Management from Oakland City University. Corinna serves on the Board of Directors for the Indiana PKU and Allied Disorders Association. She is a member of the...
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- Phenylalanine Ammonia Lyase - Enzyme Substitution Therapy for PKU; What Lies Ahead In The Absence of BH4 Responsiveness
- Metabolic Resources Coming of Age: The Adult PKU Clinic
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