Resources

Books for Patients Living with Lysosomal Storage Diseases

Joe Learns About Fabry Disease
Written by Dawn Laney, MS
Illustrated by Michael Johnson

Target Audience: Children ages 3-12 years of age

About: Joe's hands and feet feel like they are on fire! Join Joe as he learns about Fabry Disease and how to make the burning stop.

Available through Amazon or on the Emory website

Transitions Growing And Managing Your Own Healthcare: What Every Teen Living with an LSD Needs to Know to Manage Their Healthcare
Written by Dawn Laney, MS, Carol Ogg, BS and Nadia Ali, PhD

Target Audience: Ages 10-21 years

About:

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 youmight 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.

Available through Amazon

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