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
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"
HYPERSOMNOLENCE AUSTRALIA CELEBRATES 4 YEARS AS A NOT FOR PROFIT HEALTH PROMOTION CHARITY
New directions and exciting partnerships….
We have learnt a lot about Idiopathic Hypersomnia and about sleep medicine in general since Hypersomnolence Australia was officially launched in March 2013. We have learnt that sleep medicine is a fairly young medical specialty in not only Australia but the rest of the world too. When we first started Hypersomnolence Australia we were surprised to learn that sleep training for GP's was almost non existent. We were even more surprised to learn that there were too few specialty training posts for doctors in Australia that could provide broad exposure to and quality training in, the whole range of sleep disorders, particularly non-respiratory sleep disorders. We have also found this to be the case in other parts of the world too. It has certainly explained why there was a lack of awareness and quality information available about Idiopathic Hypersomnia and why there were no support services available to patients, no research being done (in Australia) and no approved medications (anywhere in the world).
While there are organisations that represent sleep health and others that represent specific sleep disorders there were no organisations anywhere in the world that catered specifically to Idiopathic Hypersomnia. When patients were diagnosed there was nowhere for them to go for information so that they could better understand the condition and the implications it has on quality of life. There was nowhere for them to direct family and friends to either which made explaining it to others very difficult.
At the beginning of 2013 we set out to change that by setting up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. Hypersomnolence Australia was registered as a Health Promotion Charity in March that year. We are still the only Not for Profit health promotion charity dedicated to Idiopathic Hypersomnia in Australia but we are pleased to say that there are now other organisations, the Hypersomnia Foundation and Atlanta Hypersomnia Support in the US on board with us raising awareness and providing support and information for Hypersomnia.
We shared this post last year on our 3rd anniversary so the direction is not so much new to us however it might be new to others that are unaware of Hypersomnolence Australia’s goals and purpose.
We will continue to move in the direction mentioned in that post and look forward to working with Sleep Disorders Australia on joint projects that see both organisations reach common goals.
Support us for your chance to WIN!
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All money raised by tickets purchased via this link go directly to Hypersomnolence Australia's Help Us Change The Prognosis campaign. 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 our “Help us Change Prognosis” campaign. You can read more about it here.
*you can see our last year’s ACNC activity statement which includes our financial statement here http://bit.ly/2pJp1BA
2016 Year in Review Newsletter
We keep all our social media and website up to date but for those of you that may miss our posts we have put together a "Year in Review" newsletter. It is a snapshot of some of the things we have been up to during the
year. Click here to view our latest newsletter.
If you would like to subscribe for our future newsletters click on this link.
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?
You may be wondering how our logo relates to Hypersomnolence Australia or indeed Idiopathic Hypersomnia.
Check out the story behind
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.
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