IDIOPATHIC HYPERSOMNIA AWARENESS WEEK COMING SOON!

MEDIA RELEASE

For immediate release 1 August 2016

Idiopathic Hypersomnia Awareness week – Let’s change the prognosis
5-11 September 2016

Hypersomnolence Australia will launch the fourth annual international Idiopathic Hypersomnia Awareness Week in September. This year our focus is on improving quality of life.

Idiopathic Hypersomnia is a neurological sleep/wake disorder. It can cause a range of symptoms including excessive nocturnal and daytime sleep despite more than adequate good quality sleep, chronic daytime sleepiness, extreme difficulty awakening from sleep and an impaired physiological state after awakening known as sleep drunkenness. These symptoms have a devastating impact on the ability to work, socialise, stay healthy and live a normal life. 

Confronting facts patients with Idiopathic Hypersomnia face regarding treatment:

• Very little is known about the cause of Idiopathic Hypersomnia so there is no cure.

• There are no approved medications and the medications that are used are not ideal as
they don’t target the cause.
• Current medications only partly assist managing symptoms and they are often not effective long term.
• A number of patient’s symptoms are refractory to current medications.
• There are no medications that assist with the extreme difficulty waking up or the sleep drunkenness that many people with Idiopathic Hypersomnia find so difficult to manage.

Idiopathic Hypersomnia is often misunderstood and with the current treatment methods being inappropriate and often ineffective the prognosis is clearly not good. We believe the key to improving quality of life is by taking a holistic or “whole” approach to treatment. Patients can very easily neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally, psychologically, as well as physically. 

The focus of the 2016 Idiopathic Hypersomnia Awareness Week is to raise awareness of the need to acknowledge the impact Idiopathic Hypersomnia has on a patient’s life and how the consequences of that can make the symptoms more difficult to manage. We want to emphasise the importance of the support and understanding of family, friends and health professionals in the overall wellbeing of those with Idiopathic Hypersomnia and we want people to understand that patients need help and practical support to manage their day to day lives.

 Idiopathic Hypersomnia Awareness Week will run from

5 – 11 September 2016.

Hypersomnolence Australia IHAW 2016 event page

IHAW Facebook Page 

IHAW Twitter  

We will be using the hashtag #IHAW2016

All media enquiries: Michelle Chadwick ihaweek@gmail.com

Click on the link below to download a copy of the Media Release

 - Ends –

 

Idiopathic Hypersomnia Awareness Week 2016 Media Release

Click on the link to download a copy of the Media Release

Community Lottery

Tickets on sale online now. The total prize pool is worth $360,000 and they are ONLY $2 A TICKET!
All proceeds go towards Hypersomnolence Australia's Help us change the prognosis fundraising campaign*

Click on the link to purchase your tickets https://www.peopleschoicecu.com.au/hypersomnolence-australia

The prize list is amazing! There are cars, Harvey Norman shopping spree worth $35,000, $20,000 travel voucher, Home Landscape Package worth $20,000, Complete Home Theatre System worth over $12,000, Kitchen Appliance Packages ranging from $5738 to almost $11,000 and loads more. Click here for a full list of all the prizes

*For more details about our campaign and what we are specifically raising funds for click here

Our New Website Project - Help Us Change The Prognosis

Our current website was built by ourselves from a simple do it yourself blog template and we have desperately outgrown its capabilities. Our goal is to develop a website that provides much needed advice and information based on the concerns that patients have raised with us directly and via our patient survey. We also plan on working with professionals to put together an information brochure with the aim to distribute them to relevant doctors and health care professionals and patients. 

 

Click here for more information on how we are progressing with our new website and how you can get involved.



WHAT IS IDIOPATHIC HYPERSOMNIA?

Finding it difficult to understand Idiopathic Hypersomnia? Having trouble explaining it to others? Our fact sheet is a brief overview of what IH is, what the typical symptoms are and where you can go for help and further information.
Click here for our FACT SHEET

Daytime Sleepiness - Finding the Cause

Hypersomnolence Australia is often asked questions like “what tests should I ask my doctor for?” and “what else should my doctor consider could be the cause of my sleepiness?” So we decided who better to ask than a doctor! From that discussion we complied a list of the most common causes of daytime sleepiness to help patients and doctors find the cause. 

Have you had these possible causes of daytime sleepiness ruled out?

Check the list out here or

Click on the link for your copy of "Daytime Sleepiness - Finding the Cause" that you can print out and share it with your doctor. 

You may be wondering how our new logo relates to Hypersomnolence Australia or indeed Idiopathic Hypersomnia.


Check out the story behind 

Hypersomnolence Australia's logo design


Did You Find the Information On Our Website Helpful?

If you found the information on this website useful, then please consider making a donation. Hypersomnolence Australia receives no funding and currently charges no membership as a result we are totally reliant on donations to help fund our ongoing work of raising awareness and providing education, information and resources. 

"It's the everyday reality that I just feel I'm not getting as much out of life as I could be..."

In this video UK Dr Anu Bhatia is spot on with the 3 main symptoms of Idiopathic Hypersomnia with long sleep. Prolonged nighttime sleep (typically 12-14hrs), difficultly waking up and feeling unrefreshed and disorientated (sleep drunkenness) and excessive daytime *sleeping* - actually sleeping during the day not just tired or sleepy. Anne the young women in the video who is diagnosed with Idiopathic Hypersomnia says something I'm sure everyone with Idiopathic Hypersomnia can relate to:

"It's the everyday reality that I just feel I'm not getting as much out of life as I could be, because I'm tired or because I'm sleeping for half the day where I would rather be doing something else." - Anne

OFFICIAL SPONSOR

www.head2toe.com.au

Head2Toe-Physiotherapy & Podiatry 
14 Pascoe Vale Rd
Moonee Ponds VIC 

For an appointment call 03 9326-0168

Hypersomnolence Australia is a registered Not For Profit Health Promotion Charity 

 Deductible gift recipient 
The Trustee for Hypersomnolence Australia is endorsed as a Deductible Gift Recipient (DGR)
from 01 Jul 2013. It is covered by Item 1 of the table in section 30-15 of the Income Tax Assessment 
Act 1997