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NARCOLEPSY
Narcolepsy is a chronic and incurable neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. While symptoms often start in childhood and adolescence, it can occur at any age, in any gender and with no previous history of narcolepsy in the family.
Due to low awareness (even among health professionals), and misperceptions, it usually takes several years for people with narcolepsy to receive a diagnosis while even more are currently undiagnosed or misdiagnosed. This also makes it difficult to provide an exact number for people living with narcolepsy, but it is estimated to be 1 in 2000. Click here to view and download our Narcolepsy Factsheet to learn more.
For information on our Living with Narcolepsy Community Group click here.
Scroll down to discover stories from people living with narcolepsy, and find information posters you can share on social media.
LIVING WITH NARCOLEPSY
Looking for support?
Hypersomnolence Australia is committed to creating spaces where people with narcolepsy can connect and share experiences. Our Living with Narcolepsy community group is the key way we do this.
The Living with Narcolepsy community group offers a safe, welcoming space where members can share their experiences - both the challenges and the wins - while exchanging advice, resources, and encouragement.
Facilitated by experienced members of the Hypersomnolence Australia team, the group is designed to reduce social isolation and provide ongoing support and reliable information for those living with narcolepsy. Learn more and find out how you can join us!
Meet Our Living with Narcolepsy Community Facilitator – Jana Chadd
Jana lives with narcolepsy type 1 and brings honesty, warmth, and resilience to everything she does. She’s passionate about breaking stigma, building connection, and making sure no one in Australia has to face narcolepsy alone. She’s also the creative heart and mind behind the narcolepsy community mascot - Kip the Koala - a symbol of recognition and comfort for people with narcolepsy.


In Jana’s own words:
“I was diagnosed with narcolepsy type 1 in 2020, after more than 17 years of living with symptoms without answers. In those early days, it was hard to see hope - the Australian narcolepsy community felt small, voices were scarce, and it was difficult to find stories that were honest, warming, and encouraging. That gap gave me purpose: to help create what I had so desperately needed myself.
Driven by my search for knowledge and a deeper understanding of the challenges faced within the Australian community led me to Hypersomnolence Australia, where I soon found myself facilitating the monthly Living with Narcolepsy catch-ups. This experience deepened my desire to do more - not just for myself, but for the wider community. The catch-ups quickly showed me how vital these spaces are: places where people can connect with others who understand, ask questions, or simply hang out. Holding that space made it clear how much our community needs stronger voices, better resources, and ongoing advocacy.
I bring lived experience, openly sharing the realities of narcolepsy - even when it’s ugly or embarrassing -because honesty matters. There is strength in vulnerability, and by being real I hope to challenge stigma, break stereotypes, and give others comfort, connection, and validation…Ultimately, my goal is to give hope in the face of what can often feel like a hopeless and daunting condition to live with forever. Through advocacy, awareness, and community-building, I want to help improve outcomes in diagnosis, treatment, and understanding, while ensuring no one in Australia has to face narcolepsy alone.”
Stories and perspectives by people living with Narcolepsy:
Understanding how chronic illness affects someone is difficult for anyone that doesn't experience it. We want to do our best to show people what it is really like to live with Narcolepsy through the thoughts and stories of people living with Narcolepsy. We also hope that their stories will help you on your journey.
Click on the images below to read about these awesome people living with Narcolepsy!

Read more about Katelyn's story...

Read more about Di's story...

Read more about Jac's story...

Read more about Katelyn's story...
Being diagnosed at the age of 49 to me meant that I had already lost the majority of my life and therefore I was determined to find the best possible way to get through my remaining years as a person who is ‘Living with Narcolepsy’ the best way that I possibly can. Click here to read more from Di.
I put a massive amount of effort behind the scenes just to function ‘normally’ every day. If you know someone with Narcolepsy, I think that’s one of the most important things to understand. Click here to read more from Jac
Mind power is everything with narcolepsy however I have lost the ability to use it. I can’t function enough to have a normal routine. To do things that I need to so that I can live normally. I can’t eat properly or sleep well at night. I forget almost everything. I have no sense of time and I feel completely lost. Click here to read more from Katelyn
If you would like to share your personal story or other living with Narcolepsy perspective on our website send it to info@hypersomnolenceaustralia.org.au
All expressions will be published anonymously unless you specifically request to have your name added to your work.
We are interested in all forms of expression, from written to visually creative work so if you are into photography, design, drawing, painting etc and have something that you have done that reflects your experience with Narcolepsy we would love to share it.

To help raise awareness we have designed Kip TShirts (white and grey) and Mugs.
TSHIRTS: $35 each.
MUGS: $30 each.
Prices include postage.
To place an order, email Michelle at info@hypersomnolenceaustralia.org.au
Let her know what you would like to order including colour, size (see size chart below) and delivery address. Please include a mobile number for tracking.
Payment is made via secure PayPal link or direct bank deposit (details will be sent to you).


Who's Kip?
When we were brainstorming ideas for something recognisable as an Australian narcolepsy icon or mascot, we landed on the perfect fit: a koala.
Our Living with Narcolepsy facilitator, Jana Chadd, brought the idea to life by sketching a koala and naming him Kip. The name couldn’t be more fitting - “kip” is Aussie slang for “nap.”
So here he is: Kip the Koala. We hope you love him as much as we do.
Measurements - across the chest (under the arm) and around the back.
Unisex Sizes:
Small = 78-84cm
Medium = 80-94cm
Large = 94-104cm
XLarge = 104-112cm
2XLarge = 112-126cm
3XLarge = 126-136cm
We do not receive funding and we do not charge membership so we do not have the resources to buy in bulk, therefore we DO NOT make any money from these TShirts or Mugs. Our goal is purely to help raise awareness. If you would like to donate you can do so via our PayPal giving fund. Any money raised goes directly towards future Narcolepsy support, advocacy and awareness events and resources.
Hypersomnolence Australia is a registered Health Promotion Charity endorsed as a Deductible Gift Recipient (DGR). All donations over $2 are tax deductible.