Share this page to help others understand Narcolepsy
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.
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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...
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.
Read stories and perspectives by people living with Narcolepsy:
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
LOOKING FOR SUPPORT?
Hypersomnolence Australia believes in providing quality support to individuals living with Narcolepsy, and our community group is a great way to do this. Our Living with Narcolepsy group is a friendly safe environment where members can discuss their challenges and successes as well as share advice, resources, and support. The group is facilitated by experienced members of the Hypersomnolence Australia team and are designed to reduce social isolation and to provide support and information for people living with Narcolepsy. Learn more including details on how you can join us!
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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).
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
Who's Kip?
During some brainstorming we spoke about having something that would be recognisable as an Australian Narcolepsy icon or mascot. We decided on a Koala (Koalas sleep a lot!). So, Jana Chadd drew up a koala and named him Kip.
Kip being slang for nap – perfect. So here he is, Kip the Koala. We hope you like him.
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.
WORLD NARCOLEPSY DAY 2023
People living with Narcolepsy shared with Di Spillane what living with Narcolepsy is like for them and what they wish others knew or understood about narcolepsy.
You can find more Living with Narcolepsy WND 2023 slides on our YouTube Channel
