Setting you up for success.
With early adulthood comes new opportunities and new challenges for PKU management. During this time, it is important to develop strategies that will help maintain ones best physical and mental health so you can approach life’s challenges with confidence and the tools needed for success. This section provides information to help young adults maintain metabolic control and avoid problems associated with high Phe levels.
Download My PKU Binder
The PKU Binder is a manual on how to effectively manage PKU day-to-day. Filled with tips and advice, from birth to adulthood, on practical and emotional levels.
*The PKU Binder was last updated in 2012 and does not reflect new treatments and updated guidelines. The NPKUA would like to thank BioMarin Pharmaceuticals; Applied Nutrition; Australasian Society for Inborn Errors of Metabolism; and Ann & Robert H. Lurie Children’s Hospital of Chicago for their generosity and expertise in helping to make this project a reality.
My PKU Binder includes the following topics and tips for young adults with PKU:
- Key factors for success in staying on or returning to a low-protein diet
- Transitioning to adult health care and management of PKU
- Relationships with family and friends
- Tips for increasing medical formula consumption
- Blood Phe monitoring for adults
- College and PKU
- Alcohol and PKU
- Weight management
Going off to college
Leaving home for college is an exciting and stressful time for students and their families. Navigating PKU adds another layer of stress and planning. We have programs to help you in this transition and beyond.
Under Title II and Title III of the Americans with Disabilities Act (ADA), colleges and universities are not allowed to discriminate against students with disabilities, including students who require a medical diet. Colleges and universities are required to provide students with reasonable accommodations necessary for them to have full and equal access to the school’s services, including access to academic instruction and access to food services and meal plans. When enrolling in a college or university, their department of Disability Services, or Accessibility Services staff can work with you to coordinate the accommodations you need for full and equal access. Chapter on 18+ to adulthood from My PKU Binder. To be hosted on the new website.
Our NPKUA Mentor Program can help you learn from others who have gone to college with PKU.
Find a clinic – You might consider finding a clinic closer to your school.
Click here to find a clinic.
Cooking and Food
As you’re starting a new chapter of your life with more autonomy, experiencing new situations and new friends, here’s a great way to have resources easily available to help you on your low-protein diet. Cooking and Food
Insurance Coverage
When it comes to insurance, it can be very confusing, but we’re here to help and to take the confusion out of it with information, explanations, and resources. Insurance information
