Program 1: People
- Health
- Working Paper
Making Sense of Narcolepsy: A Qualitative Exploration of How Persons with Narcolepsy Perceive Symptoms and Their Illness Experience
Published: 2023
Narcolepsy is a rare, neurological sleep disorder that carries an unacceptably high burden of disease on patients, family/carers, the community and healthcare system as a whole. This impact remains largely hidden due to inadequate data collection, management and utilisation within our healthcare system, having been designed to respond to individual diseases with much larger patient numbers. Patients and family/carers at the recent Parlimentary Inquiry into Sleep Health Awareness reported a general lack of awareness and education, an inability to access quality care, social consequences, lack of research and scientific knowledge and limited and expensive treatment options.
Research Fellow
|
Knowledge Transfer Project Officer
Medicine
This page was printed at 3:20 pm on Thursday, 18 Jul 2024.
Please see https://lifecoursecentre.org.au/members/aaron-schokman/ for the latest version.
© COPYRIGHT 2024. ALL RIGHTS RESERVED.