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My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials include the newest and best thinking on PKU and offer hundreds of tips, advice and what to expect from birth to adulthood both practically and emotionally. The National PKU Alliance hopes My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help.
The NPKUA would like to thank the following companies and people for their generosity and expertise on this project. Without their support, the PKU Binder would not have been possible:
- BioMarin Pharmaceuticals — for supporting My PKU Binder with an educational grant
- Applied Nutrition — for use of My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey: Applied Nutrition Corp. 2007 in several of the chapters
- Australian Society for Inborn Errors of Metabolism — for use of their PKU Handbook in several of the chapters
- Children’s Memorial Hospital Chicago — for their edits, contributions and medical review of the information in the handbook
Click here to download complete binder (8 MB)
Click on any of the Chapters to see what is in that section.
Table of Contents
- Acknowledgements Click here to download >
- Personal Health Form Click here to download >
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Chapter 1: What is PKU?
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Chapter 2: Treatment and Diet Overview
The PKU Clinic Team, Diet Essentials, Counting Phe/Protein, KUVAN®, Large Neutral Amino Acids (LNAA), Future of PKU Research and Treatment, Special Considerations Click here to download this section >
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Chapter 3: Monitoring Blood Phenylalanine Levels
Blood Phenylalanine Levels, Monitoring Phe Levels, Suggestions for Success and Avoiding Problems, Tips for Successful Blood Sampling, Blood Samples from the Vein Click here to download this section >
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Chapter 4: Diagnosis to 2 Years
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Chapter 5: Ages 3 to 6 Years
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Chapter 6: Ages 7 to 12 Years
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Chapter 7: Ages 13 to 17 Years
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Chapter 8: 18+ to Adulthood
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Chapter 9: PKU and Pregnancy
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Chapter 10: Dining Out and Other Tips
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Chapter 11: Traveling
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Chapter 12 - Emergency Preparedness
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Chapter 13: Tracking Your Progress
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Chapter 14: Insurance Coverage for PKU Treatment
Insurance Overview, Understanding Your Current Health Insurance Plan, Letter of Medical Necessity, Dealing with Your Insurance Company, Flexible Spending Accounts, Insurance Resources, Sidebar: What is ERISA? Click here to download this section >
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Chapter 15: Resources
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Chapter 16 Glossary
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