Di Spillane

Di lives in South Australia and has Narcolepsy Type 1.

I have lived with narcolepsy since childhood, although I wasn’t diagnosed until the age of 49. 

For decades, I experienced profound exhaustion and excessive daytime sleepiness without understanding that this was not normal.

Following years of misdiagnoses and extensive medical investigations, I was finally diagnosed with narcolepsy type 1. 

Being diagnosed later in life has shaped a strong commitment to self‑advocacy, accurate information, and better care for people living with narcolepsy.

As a member of the Sleep Health Foundation consumer panel, I am passionate about raising awareness of narcolepsy, improving the information provided at diagnosis, and advocating for better long‑term support for the Australian narcolepsy community.