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Advice for Adults with PKU: Improving Your Life by Returning to Diet

PROGRAM DETAILS:

Adults living with PKU may have childhood memories filled with thoughts of chalky formula and limited food choices, but this is no longer the case. The PKU diet and treatment options have changed dramatically in the past several years. In this Patient Power program, metabolic experts will discuss the issues of returning to diet as an adult and what new tools are available to help you get your PKU diet back on track. You will learn what has worked for other adults coming back to clinic and you’ll also hear from a patient who returned to diet after being off for almost 20 years.

Matt is 34-years-old. After being off of diet since the age of 14, he has recently returned to PKU treatment with the help and encouragement of his sisters. After talking with his primary care physician, Matt took a big step and went to the PKU clinic at Children’s Memorial Hospital, despite the remarks from his doctor. There Matt connected with dietitian Maryam Naziri, also featured in this PKU program. Ms. Naziri talks about how she helped Matt to develop a plan, making his transition that much easier. Matt is impressed with his new options for formula and food and, though Matt doesn’t feel that much different, his sisters see big changes in him socially.

Also joining the program is Richard Dineen, a genetic counselor at the University of Illinois Medical Center. Mr. Dineen discusses the importance of support both from family and community, and the resources available to those with PKU. Ms. Naziri fine points what you can expect from your first clinic visit and why it’s so important to stick with it. The guests both share tips and advice for adults returning to clinic and what has worked for others. If you or someone you know is considering a return to clinic, this program can ease your fears and provide you with the information you need to make that step.

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EXPERTS & GUESTS:
Richard Dineen, M.S., C.G.C.
Genetic Counselor, University of Illinois Medical Center
Richard Dineen is a certified genetic counselor. He received his master’s degree in genetic counseling from Sarah Lawrence College. Mr. Dineen has been employed by the University of Illinois since 1991. Since that time, he has had the opportunity to work in many areas in the field of genetics. In his current position, he has the chance to work with... more >

Maryam Naziri, R.D., L.D.N.
Metabolic Dietitian, Division of Genetics, Birth Defects & Metabolism, Children's Memorial Hospital
Maryam Naziri is a Metabolic Dietitian at Children's Memorial Hospital in Chicago, Illinois. Mrs. Naziri works with patients of all ages that have a diagnosis of Phenylketonuria (PKU) as well as other metabolic disorders such as Maple Syrup Urine Disease (MSUD), Organic Acidemias, Fatty Acid Oxidation Disorders and Urea Cycle Disorders. She received her Bachelor of Science degree in Human... more >

Matt Arch,
34-year-old with PKU that recently returned to diet
Matt followed the PKU diet until age 14. In the past year, Matt has sought treatment advice from his dietitian at Children's Memorial Hospital, Maryam Naziri. His return to diet has made significant improvements in his life. more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Returning to Diet After 20 Years LISTEN
  3. Developing a Plan LISTEN
  4. Family and Community Support LISTEN
  5. Returning to Clinic: What to Expect LISTEN
  6. Resources Available LISTEN
  7. Listener Questions LISTEN
  8. How to “Stick with It” LISTEN

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