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Lifting the Fog: Sharp Thinking with PKU

PROGRAM DETAILS:

Many people with PKU describe being on a well-managed diet and treatment plan as feeling like a “fog has been lifted.” Whether it is trouble concentrating or difficulty with planning, cognitive issues may not even be noticeable until after a successful PKU routine begins. In this podcast, our expert panel explores:

  • What does being in a “fog” feel like? How can you and your loved ones recognize the signs and symptoms?
  • How cognitive problems can affect your life and relationships.
  • The role of elevated Phe levels and Phe variability in maintaining cognitive function.
  • Strategies and tools for getting control and feeling your best.

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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 >

Hunter Rametta Hunter Rametta,
Patient Living with PKU
Hunter Rametta of Connecticut is a devoted clinical dietitian helping people with nutritional issues. She should know. She was born with PKU, a rare metabolic condition that requires her to follow a special diet for life.  Hunter knows what it's like to plan and prepare meals that meet her unique nutritional needs. She knows what it's like to swallow pills... more >

Laura Jeffers Laura Jeffers,
Metabolic dietitian, The Cleveland Clinic
Laura Jeffers is an outpatient clinical manager and primary metabolic dietitian at Cleveland Clinic in OH. She has been a dietitian for eight years and has experience in general pediatric nutrition, weight loss, allergies, celiac disease, and weight management. Laura sees adult outpatients for weight loss, diabetic diet education and gi disorders. She has been the primary metabolic dietitian at the Cleveland... more >

Andrew Schorr Andrew Schorr,
Founder of Patient Power and Leukemia Survivor
Andrew Schorr of Seattle is a medical journalist who was diagnosed with chronic lymphocytic leukemia in 1996. By participating in a clinical trial he has enjoyed a deep and lasting remission which has enabled him to be a pioneer in providing authoritative medical information online for other people facing serious illness. As a passionate patient-advocate, and with support from many... more >

TRANSCRIPT:

  1. Strategies for Coping with “Foggy” Thinking LISTEN
  2. The Role of Phe Levels LISTEN
  3. Assessing Cognitive Issues in Children LISTEN
  4. Audience Questions LISTEN

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