It is the 2017 Idiopathic Hypersomnia Awareness Week

4-10 SEPTEMBER 2017 is the 5th annual International Idiopathic Hypersomnia Awareness Week.

Click here for more information about the IHAW 2017.

Thank you to everyone that supported our Thunderclap. With your help we reached 347,584 people in 327 cities around the world!

Looking for Idiopathic Hypersomnia Awareness Week® merchandise? Click here for information.

Click here for suggestions on what you can do to help raise awareness. 

Click here for images to use and share.

Click here for the IHAW MEDIA RELEASE.

and don't forget to like and follow the Idiopathic Hypersomnia Awareness Week ® social media Facebook, Twitter @IHAWeek and Instagram.

If you have any questions about the Idiopathic Hypersomnia Awareness Week ® contact ihaweek@gmail.com

Click here for the online version of the IHAW2017 Media Release or go to the IHAW2017 page for the link to download a copy.

Click here to listen to our community service announcement on Soundcloud.

Radio Producers - if you would like to download a copy of our community service announcement click here. If you use our CSA please drop us an email at ihaweek@gmail.com to let us know. 

Campaign: Idiopathic Hypersomnia Awareness Week
Running Dates: Now till 10th Sep 2017
Contact: Michelle Chadwick - ihaweek@gmail.com

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

Dr Bhatia and Anne discuss Idiopathic Hypersomnia

In this video on GMTV UK, Dr Anu Bhatia is spot on with the 3 main symptoms of the complete form of Idiopathic Hypersomnia. 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. Anna 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

SLEEP HEALTH IN PATIENTS WITH SLEEP DISORDERS SURVEY

Numerous studies have found that consistently sleeping for more than nine hours or fewer than eight hours a day has a negative impact on physiological, psychological and cognitive functions. Studies have also found that long periods of bed rest also have detrimental effects on the body. We know that the treatment options available for sleep disorders are in some cases limited and in other cases not suitable or not overly effective. This results in patients struggling to manage their symptoms which in turn comprise their overall health and wellbeing. However many factors besides the possible ineffectiveness or suitability of sleep medications play a role in overall health and wellbeing. Good sleep hygiene, being physically active, a balanced diet and a lifestyle conducive to a patient’s condition are all equally important.

We conducted an online survey, "Sleep Health in Patients with Sleep Disorders". The aim of the survey was to get a snapshot of the sleep health of people diagnosed with sleep disorders, including information pertaining to their sleep habits, how much people with sleep disorders know about sleep health, what they have been advised by their doctors, and what they think they should have been told. 

What do people with sleep disorders know about sleep health? What have they been advised by their health care professionals and also what do they think they should have been told?

Thank you to all those that participated. We are currently collating the data and will be publishing information regarding the results soon. Below are some preliminary results as well as some feedback from patients that completed our survey. 

We will be adding to this information, so check back to see more.

The last question in our survey asked;
"What is your biggest concern/hurdles you face or issues you think need addressing?

These are some of the responses we received from patients diagnosed with Idiopathic Hypersomnia:

"My biggest concern is that my doctors will never figure out why I have this horrible disorder and I will miss out on so much more of my life"

"My biggest concern is not being able to work as hard or achieve as much in terms of study and work due to not having the physical capacity that others without IH have"

"I spend so much of my life asleep. I'm literally sleeping my life away and there is nothing I can do about it. I don't think anyone understands how serious that is”

"I have no quality of life, I'm just existing”

“Having children's activities that I can not attend"

"Never knowing what it's like to feel normal"

"I'm always on the verge of losing my job because I can't wake up in the morning. This is really stressful"

Support us for your chance to WIN!

Tickets are sold out - PRIZES DRAWN 4TH OCTOBER

For as little as $2 you get to support a worthwhile cause and be in the running to win one of the many prizes in the People’s Choice Lottery prize pool worth over $360,000!
There are loads of prizes to be won including 3 cars, shopping sprees, landscape package valued at $20,000, home theatre system, a $20,000 international travel voucher and much more!
Click here to check out the full prize list.

Hypersomnolence Australia receives no funding and relies on the generous donations of our supporters to continue to do the work we do (including hosting the annual Idiopathic Hypersomnia Awareness Week). Our income is extremely small* - we need your help. All funds raised in the lottery will go towards building our new website.

*you can see our last year’s ACNC activity statement which includes our financial statement here http://bit.ly/2pJp1BA


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 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. 

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

If you have a question please email us at admin@hypersomnolenceaustralia.com or via our contact page here

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