PCR269 People and Families Affected by Gsdia: An Analysis of Narrative Accounts Written by Caregivers and Individuals Living With GSDIa

Abstract

Glycogen Storage Disease Type Ia (GSDIa) is a rare, inherited disorder that can lead to renal and hepatic complications, brain damage, and death. Dietary management based on frequent cornstarch consumption can cause gastrointestinal and nutritional issues, sleep disruption, and psychosocial problems. This study was designed to describe the individual experiences of those affected by GSDIa through qualitative methods by asking patients and caregivers to provide written summaries of how the condition affects them.