The teenage years are a time when teens often begin separating their thoughts, goals, and self-image from those of their parents. They begin exploring who they are and who they want to become as they enter adulthood. For people living with a chronic disease, like a lysosomal storage disease, the teen years should also include a gradual transfer of medical care responsibility from parents to the teens themselves. As you might guess, it’s a lot easier to learn to do this slowly and with a plan, rather than jumping headfirst into a fast and confusing crash course of medical needs on your 18th birthday. This workbook, Transitions: Managing Your Own Healthcare, is packed full of exercises designed to help teens figure out how much they already are managing their own healthcare and how to uncover what they still need to learn and master to successfully manage their own healthcare.
The ThinkGenetic Foundation is proud to refer “Transitions: Managing Your Own Healthcare: What Every Teen with an LSD Needs to Know” to families with children and teens diagnosed with a LSD in support of our mission to educate and empower the genetic condition community.
Written by Dawn Laney, MS, CGC, CCRC, Founder of ThinkGenetic, Inc. as well as Assistant Professor, LSDC Program Leader, and Director of the Emory Genetic Clinical Trial Center at Emory University in collaboration with Carol Ogg, BS Pharm and Nadia Ali, PhD.