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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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Transcript

This is our lucky 13th live webcast for folks concerned about PKU, and I’m so excited.  We’re kicking off a 2010 series of four more programs, and so the one tonight, Advice for Adults with PKU:  Improving Your Life by Returning to Diet and getting back in treatment.  April 13th is the date for the following program.  That’s going to be on PKU and Pregnancy:  Lowering the Risks and Having a Healthy Baby.  May 4th, Achieving Better Health While on a PKU Diet:  What’s New?  And then in September, and we’ll pick the date with you, we will be doing a program on Young Adults with PKU:  Transitioning to Life Out on Your Own. 

Now, think about it, transitioning to life, some people transitioned years ago when the thinking used to be, well, we’ll give you PKU treatment as a child and then you don’t need it any more.  Go live your life, we dealt with it with Phe levels when it was really important to deal with it, and then your brain has developed, go live your life.  Well, guess what.  That’s not what we know is appropriate anymore.  Now it is diet for life, and we’ve talked about that on so many of our programs.  Remember, the whole library of programs is at www.patientpower.info/PKU and inspiring patient videos as well, and we’ll talk about new ones we’re doing in just a little bit.

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