World Narcolepsy Day 2026 – Narcolepsy Is

Every year I think of different ideas for raising narcolepsy awareness for World Narcolepsy Day, September 22nd.

In previous awareness campaigns, I’ve shared community responses from the Living With Narcolepsy in Australia Facebook group, released a song titled ‘The Underground Railroad‘, and launched a limited podcast series: ‘Waking Up Tired – Narcolepsy Symptoms Explained‘ a project featuring real stories from people living with the condition.

This year, I decided to focus on what ‘Narcolepsy Is.’ I invited members of the Living With Narcolepsy in Australia group to complete the sentence ‘Narcolepsy Is…’

Here is what our community shared:

Published by Di Spillane

My name is Di Spillane and I am Living With Narcolepsy (N1) in Australia. Despite having lived with this disorder since childhood, I wasn't diagnosed with narcolepsy + cataplexy (N1) until late in life at the age of 49. Every person has their own personal journey, this website is where I will share my story about living with narcolepsy & cataplexy, and my long journey to receiving a diagnosis. I will share information and tips for managing day to day life in an effort to help others who live with narcolepsy, help those who suspect that they might have a sleep disorder by providing information about my experiences, and help the narcolepsy community by advocating, educating, and raising public awareness of this debilitating rare sleep disorder.

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