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Spring Survey Results 2012

Phenylketonuria (PKU) Health Center

Get Email Updates on Phenylketonuria (PKU):

Phenylketonuria – commonly called PKU – is an inherited metabolic disorder in which the body is unable to break down the component of protein called phenylalanine. In people with the disorder, high levels of phenylalanine can build up in the body, particularly in the brain, where it can have a toxic effect. This phenylalanine build-up can result in impaired brain function and developmental problems, particularly in young children going through critical developmental stages. PKU can be diagnosed at birth, and treatment traditionally has consisted of careful control of phenylalanine intake through a stringent low-protein diet supplemented by special foods. However, today new treatment options have become available for PKU.

May 22, 2012

Anna Parker: PKU Doesn’t Hold Me Back

(More Info)

Featuring:

Anna Parker

Welcome to Patient Power's PKU Education Center

Patient Power PKU features more than forty in-depth programs featuring PKU nutritionists, doctors, and patients on a wide range of topics important to PKU patients, parents, and caregivers in our Education Center; video stories from Powerful PKU Patients; and local advocacy resources.

Grassroots Expertise

Brenda Winiarski, founder of Cook for Love and mother to a child who has PKU, shares her tips for adding variety to the PKU diet. Brenda explains healthy strategies for making delicious meals and connecting with your loved ones in the kitchen. Visit our program Achieving Better Health While on the PKU Diet: What’s New? to learn more.

Powerful PKU Patients

Nicole Pallone of Sparwood, British Columbia is mother to three-year-old Rosie—a bright, vibrant, vegetable-loving, almost-four-year-old—who was diagnosed with a rare genetic condition called phenylketonuria (PKU). There was enormous concern during the first six months, but fortunately, with good clinical care and a detail-oriented nurse, they learned how to get enough calories to Rosie without also giving her too much protein. At 20 months, Rosie began taking formula and had a great response. Inspired by her daughter’s rare condition, Nicole is vice president of Canadian PKU and Allied Disorders (CanPKU), a nonprofit organization helping educate those living with PKU and providing opportunities for families to connect and be empowered.

 

Listen to the Latest Webcast

Lifting the Fog: Sharp Thinking with PKU. Featuring Dr. Susan Waisbren, Laura Jeffers and Hunter Rametta.

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.