Transitioning - Teens to Young Adults

These resources and activities are for teenagers who are transitioning to adulthood, and who are ready to be in charge of managing their metabolic condition and their health in general.

Introduction to Transitioning to Adult Healthcare – This introduction for adolescents, young adults, and families explains the steps to take as teens and young adults with metabolic disorders transition to caring for their own health. It includes information about independent health care visits, guardianship, healthcare proxies, medical records confidentiality, and our Transition Toolkit.

Transition Toolkit – The Boston Children’s Hospital Transition Toolkit was created for teenagers who are transitioning to adulthood, and who are ready to be in charge of managing their metabolic condition and their health in general. The toolkit includes basic FAQs about various metabolic conditions, a health summary form for teens to fill out and keep in a safe place, and a transition plan for teens to discuss and fill out with their primary care provider and metabolic specialist.

Moving on with Mito – This comprehensive guide, developed at Boston Children’s Hospital, is for teens and young adults living with mitochondrial disorders who are transitioning to adult health care and independent living. The guide includes: mitochondrial basics; health care advice; tips for success in college, employment, and independent living; and stories of real people with mitochondrial disorders living their lives to the fullest.

PKU Primer for Adolescents and Adults
This guide features information for adolescents and adults with PKU. It includes: a definition of PKU, how it is inherited, how to maintain a healthy diet, how to handle school/work, and details about becoming pregnant if you are a woman who has PKU.

PKU Toolkit
This toolkit is designed to be a personal guide for teens and young adults with PKU, including comprehensive information about nutrition, diet, treatment, and lifestyle issues. It provides information, resources, checklists, and quizzes to help you better manage your PKU. Also included is information about new, more convenient and tasty options in PKU formula and low-protein foods. Reading this toolkit can also be useful for family, friends and significant others of adults with PKU.