Education Tools to Help you Understand PKU and other Metabolic Disorders

Do you have questions about inborn errors of metabolism like PKU, MSUD, or MMA/PA? We’re here to support you with easy-to-understand education tools.

As part of our Nutricia Connect support platform, we offer easy-to-understand education materials that provide information on complex disorders like PKU, MSUD, and others.

We’re here to support you as you educate yourself, your family, friends, and others in your community about the metabolic disorder that you’re managing.

Illustration of doctor shaking hands with parents holding a baby
Have questions about inborn errors of metabolism like
PKU, MSUD, or MMA/PA? We’re here to help.

We understand that inborn errors of metabolism like PKU are complicated and can be difficult to understand. You probably have questions about the disorder that you’d like answered – or perhaps you have a family member who’s asking questions. Our educational booklets, videos, and downloadable information sheets for PKU and a variety of other disorders are below. These materials tackle a variety of common topics related to PKU and other inborn errors of metabolism.

Remember that if you have questions specific to your or your loved one’s diet or condition management, always reach out to your metabolic healthcare team.

What is PKU? (or MSUD, MMA/PA, HCU, and other inborn errors of metabolism?)

Download TEMPLE booklets explaining various inborn errors of metabolism in our Education & Support Section. Available in multiple languages:
English, Spanish, French, and Arabic! You can also ask your clinic for printed copies.

Are you a new parent who’s learning about your child’s inborn error of metabolism like PKU? Perhaps you recently received your child’s positive newborn screening. Or, perhaps you’re a family member to a baby with a recent diagnosis.

Our TEMPLE (Tools Enabling Metabolic Parents Learning) series of booklets and videos explain inborn errors of metabolism in easy-to-understand language and pictures. They’re perfect if you’re new to the world of PKU, MSUD, and other disorders, or if you need a refresher on the basics, such as:

  • What is PKU?
  • How did my child/ my relative get PKU?
  • What do we feed a child with PKU?

TEMPLE booklets are available for phenylketonuria (PKU), maple syrup urine disease (MSUD), homocystinuria (HCU), isovaleric acidemia (IVA), glutaric acidemia type 1 (GA-1), tyrosinemia type 1 (TYR), and methylmalonic and propionic acidemia (MMA/PA). We offer TEMPLE in multiple languages – English, Spanish, French, and Arabic – to support families and friends of all backgrounds. View the booklets here! (Scroll to the disorder you’re interested in.) You can also ask your metabolic healthcare team for printed copies of our TEMPLE booklets.

Our TEMPLE videos on Nutricia’s YouTube channel complement our TEMPLE booklets and provide helpful animations for how the disorders function in the body. The videos also run through common best practices for managing your or your loved one’s condition.

graphic advertising TEMPLE educational series (illustration of doctor talking to parents holding a baby)
View our entire TEMPLE educational series on our YouTube channel. Videos available for PKU, MSUD, HCU, GA-1, IVA, and TYR. (We also have a MSUD video in Spanish on our channel!)

How do I teach family members, caregivers, or friends about PKU?

Teaching babysitters, grandparents, teachers, and other caregivers about the basics of your loved one’s PKU is a common experience, but it can be difficult to remember all of the important details in one go. We created simple education sheets that are free to download and cover common questions and important reminders related to PKU management. (If desired, you can ask your metabolic dietitian for printed copies of PKU Guides from Nutricia.)

graphics of PKU guides available on the site
PKU Guides are simple, colorful sheets that help you educate caregivers like babysitters and teachers on the basics of PKU and PKU management. Also available in Spanish!

These education sheets cover the “101” of PKU for

  • Teachers & School Nurses, Dining Out with PKU,
  • Babysitters,
  • Grandparents,
  • Pregnancy & PKU,
  • and an overview of PKU Formula & Diet

Access them here and use them to help inform others on basic yet very important PKU topics. These guides are also available for download in Spanish!

How do I cook for the low protein diet, and what recipes can I make?

Looking for low protein recipes? Curious about how to prepare jackfruit and other favorite low protein ingredients? Head to our Recipes page. There, you’ll find low protein recipes for main dishes, desserts, snacks, veggie dishes, and more that are suitable for the low protein diet. To make your cooking and diet management as easy as possible, we provide protein, phenylalanine, leucine, and tyrosine content for individual servings and full recipes.

Where can I learn more about PKU and how to live with PKU? (or MSUD, MMA/PA, HCU, or other inborn errors of metabolism)?

If you’re in doubt about something or have questions on topics not covered here, always go to your metabolic healthcare team as your source for information and guidance. Similarly, if you have questions that are specific to your or your loved one’s situation and condition management, reach out to your metabolic healthcare team. They’ll be able to guide you and provide personalized answers to your questions.

After browsing our education materials for PKU and other conditions on our Education & Support pages, we hope you have tools to help you and others in your network better understand and care for metabolic disorders. Another handy tool is our blog. It’s continually updated to provide you fresh stories, education materials, and more.

Stay connected with Nutricia for more education and support by joining Nutricia Connect, our free-of-charge support platform. Sign up today!

This blog post is for educational purposes only and is no way intended to replace the care, advice, and medical supervision of your metabolic healthcare team. Always consult your metabolic healthcare team prior to making any changes to your or your loved one’s diet or condition management.

Nutricia North America offers a range of products that are medical foods for the dietary management of inborn errors of metabolism and must be used under medical supervision.

Brought to you by Nutricia North America

© 2021 Nutricia North America

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