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Managing PKU at Any Age

PROGRAM DETAILS:

The PKU diet can be difficult to follow at any age. For children, and those going through adolescence, "fitting in" becomes a factor. PKU patients who are pregnant deal with constant changes and extra special care for a growing fetus. Older patients are still relatively new to PKU care, as adult clinics are scarce. In this Patient Power program, hear from experts on treating this disease at any age and how you can be prepared for your future. You’ll hear from Dr. Richard Koch, sometimes called “The Grandfather of PKU” and his patient, Vivianne. Dr. Koch is currently monitoring Vivianne through her first pregnancy. Also joining the program is Dr. Laura Pickler, a board certified family physician with special expertise in the transition of those with PKU from teens into adulthood. Monica Giovanni, a genetic counselor at Brigham and Women’s Hospital, shares her expert advice on the challenges that adults face living with PKU.

The program begins with Vivianne’s story of living with PKU, and deciding to have her first child. Because Vivianne has always been meticulous about her phe intake, she has never had much of a problem with her levels. Prior to her pregnancy, she tried Kuvan but little response. However, at the suggestion of Dr. Koch, she began taking Kuvan during her pregnancy and it has helped her to safely maintain her phe levels while eating more to accommodate her developing baby. Hear about the emotional changes Vivianne noticed in her feeling and cognitive thinking.

Dr. Koch then joins the discussion to share information about his history with PKU and what it has been like follow Vivianne. He talks about the great benefits in maintaining phe levels and how he feels about the new ways of managing PKU. Dr. Laura Pickler speaks about her experiences in the clinic at the University of Colorado at Denver Health Sciences Center. She also talks about her research, including the workbook she developed “It’s Time To Transition!” that helps young adults transition into adulthood while managing their condition effectively.

Monica Giovanni provides her perspective on the differences in managing PKU as a child and an adult. She shares examples such as making dinner for children without PKU, and addressing what it means to be an adult with PKU. In her own words “…there are some serious challenges but adults with PKU who then are able to regain control always report to us that they are physically and mentally better and also those around them report those changes as well, so it leads to kind of a better family life and better life with friends.” Listen to this program to learn about the daily challenges of those living with PKU and how to best protect your health as you age.

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EXPERTS & GUESTS:
Richard Koch, M.D. Richard Koch, M.D.
Professor of Pediatrics Emeritus, University of Southern California-Keck School of Medicine
Dr. Richard Koch is Professor of Pediatrics Emeritus, University of Southern California (USC) Keck School of Medicine. He graduated from medical school in 1951 at the University of Rochester in New York. He spent his professional career at the Children's Hospital of Los Angeles, part USC. Dr. Koch has specialized in the treatment of PKU for over 50 years. Dr.... more >

Laura Pickler, M.D.
Clinical Genetics and Metabolism, The Children's Hospital, Aurora, Colorado
Dr. Laura Pickler is a board certified family physician with an active primary care practice serving children, youth, and young adults with special health care needs. She also has completed two fellowships in Child Development and Clinical Genetics and Metabolism and additionally provides consultative care in these fields. This training has poised her to take a lead role in implementing... more >

Monica Giovanni, M.S., C.G.C.
Genetic Counselor, Adult Genetics Service, Brigham and Women’s Hospital
Monica A. Giovanni is a genetic counselor for the Adult Genetics Clinic at Brigham and Women's Hospital and the Harvard-Partners Center for Genetics and Genomics. In this role, she provides counseling and support for individuals with diagnosed genetic conditions, individuals with a family history of genetic disease, and preconception counseling for individuals planning pregnancy. Her clinical interests include the care... more >

Vivianne Wightman,
Dr. Koch's Patient, Living well with PKU
Vivianne Wightman Hall, 38, is a maternal PKU patient who has been seen by Dr. Richard Koch since infancy. She has consistently maintained good control of her diet. She is the sixth of eight siblings, and one of two children in the family born with PKU. Her younger brother, Stuart Wightman, 32, also has PKU. She was married a little... more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Vivianne’s Story LISTEN
  3. Managing Phe Levels LISTEN
  4. Benefits of Controlling Phe Levels At Any Age LISTEN
  5. Listener’s Questions LISTEN

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