The most important annual event for Idiopathic Hypersomnia is the International Idiopathic Hypersomnia Awareness Week® hosted by Hypersomnolence Australia. It is held annually in the first full week in September.
The Idiopathic Hypersomnia Awareness Week® has grown from its first event in 2013 so we decided it deserved its own social media! As of 2016 the Idiopathic Hypersomnia Awareness Week now has its own Facebook page, Twitter @IHAWeek and Instagram.
This year we will be using the hashtag #IHAW2017
Idiopathic Hypersomnia Awareness Week®’s social media will be the central hub for the Idiopathic Hypersomnia Awareness Week event so make sure to “follow” on Twitter and Instagram and “like” the Facebook page - make sure you set your notifications to “on” so that you don’t miss anything. Click here to find out how you do it.
It is the mission of Idiopathic Hypersomnia Awareness Week® to raise awareness and to help improve the level of education of Idiopathic Hypersomnia among the general public, Hypersomnia patients and medical professionals. Idiopathic Hypersomnia Awareness Week® is hosted by Hypersomnolence Australia and actively encourages other organisations to join in this effort. After all, we have similar goals and we champion this cause for the same reasons. We believe the key to success is a unified voice under one banner.
If there are any individuals or organisations that would like to get involved or share their event or initiative please contact us at firstname.lastname@example.org
The history of the Idiopathic Hypersomnia Awareness Week® thus far....
The first annual Idiopathic Hypersomnia Awareness Week® was launched and hosted by Hypersomnolence Australia in September 2013. It was a month long awareness campaign focused on raising awareness of Idiopathic Hypersomnia as much as we could in every area that it was necessary. This was a big job. Idiopathic Hypersomnia was barely mentioned on the internet much less in the general public. Following on from that the 2014 the theme was raising awareness within our own communities. The very low level of public awareness and the misinformation about Idiopathic Hypersomnia within the medical community leads to stigma for many patients so they often keep their diagnosis to themselves or only share it with close family or friends. The isolation and the burden of not sharing important information about one’s health contributes to making the symptoms of Idiopathic Hypersomnia more difficult to manage. The aim in 2014 was to help support those who felt unable to speak about their diagnosis, particularly in areas where they were being discriminated against or felt judged and isolated.
The 2015 Awareness Week was all about education. We found that raising awareness of Idiopathic Hypersomnia required educating not only the public but also sections of the medical community. Too many people were under the impression that Idiopathic Hypersomnia simply meant a patient was sleepy but their doctor didn’t know why, that Idiopathic Hypersomnia literally meant sleepy with no known cause. This is not accurate and I showed that by presenting a detailed tribute to Bedrich Roth
Roth was a renowned neurologist responsible for identifying and naming Idiopathic Hypersomnia. His seminal works over many years on narcolepsy and idiopathic hypersomnia have left an indelible mark on the history of sleep medicine. 2015 marked the 35th anniversary of Roth’s classic text Narcolepsy and Hypersomnia (1980 S. Karger; NY, NY). The book Narcolepsy and Hypersomnia was published in English in 1980 and is an accumulation of Roth’s work spanning more than 30 years. In fact it is officially Roth’s second monograph on narcolepsy and hypersomnia. The first volume was published 23 years earlier in 1957 - Narcolepsy and hypersomnia from the aspect of physiology of sleep making Roth’s work the first in the area of modern day era Narcolepsy and Hypersomnia research. I spoke to several highly regarded neurological sleep physicians including those that worked closely with Roth. They gave me an insight into how Idiopathic Hypersomnia was identified and documented. They also shared with me their thoughts on more current research and issues that patients with Idiopathic Hypersomnia face due to the lack of understanding of Idiopathic Hypersomnia within areas of the medical community.
The theme for 2016 was “Improving quality of life”, this followed on from Hypersomnolence Australia’s campaign “Help us change the prognosis”. We know that an average person sleeps 8 hours a night which means, if they live to the age of 75 they will spend one third, or 25 years of their life asleep. That means that people with Idiopathic Hypersomnia can spend as much as 50 of their 75 years asleep and the remaining 25 years fighting to wake up and struggling to stay awake! This naturally provides its own set of issues completely apart from the symptoms of the disorder. Idiopathic Hypersomnia is a lifelong debilitating disorder, often profoundly affecting every area of life including education, employment and relationships. As a result of this and the stigma often attached to Idiopathic Hypersomnia it is not uncommon for patients to suffer psychologically including feeling isolated, and at times depressed and socially anxious.
Because very little is known about the cause of Idiopathic Hypersomnia so there is no cure. There are no medications specifically approved and the medications that are used to counter the daytime sleepiness are not ideal, they don’t target the cause and in some cases they are not appropriate at all. In most cases they only assist a patient to manage their symptoms and are often only effective for a short time. Unfortunately 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. Being diagnosed with Idiopathic Hypersomnia can however provide sufferers with some relief. They can finally prove to their critics that they are not lazy, that they do not choose to sleep excessively and that they do not do anything to contribute to their sleepiness. However the prognosis clearly is not good and finding this out can be very confronting, and very lonely.
The 2016 Idiopathic Hypersomnia Awareness Week® was all about raising 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 believe the key to improving quality of life is by taking a holistic or “whole” approach to treatment. We want to emphasise the importance of the support and understanding of family, friends and doctors 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.
There are many misperceptions about idiopathic hypersomnia. This combined with inappropriate testing methods has resulted in idiopathic hypersomnia being one of the most misdiagnosed
of all neurological sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for these same reasons is immeasurable. Further research is desperately needed in all areas, ie: etiology, epidemiology, the genetic aspects of
the disease and to identify biomarkers that will lead to better more appropriate diagnostic tools. The theme of Idiopathic Hypersomnia Awareness Week ® 2017 is “Research”.
Want to know what we are up to for the 2017 Awareness Week? Click here and don't forget to check out the Idiopathic Hypersomnia Awareness Week® Facebook page.
How does the IDIOPATHIC HYPERSOMNIA AWARENESS WEEK® Logo represent Idiopathic Hypersomnia?
While there may not yet be any biomarkers or other clinical tests that can confirm Idiopathic Hypersomnia various research over the years shows that patients with Idiopathic Hypersomnia, particularly Polysymptomatic Hypersomnia typically have more “slow wave sleep” (also referred to as “deep sleep”) than the average person. Delta waves, like other brain waves, are recorded by EEG during an overnight sleep study (polysomnogram). Delta waves are usually associated with the deep sleep experienced during stage 3 of NREM sleep, also known as slow-wave sleep (SWS). Below is an example of what delta waves look like during Slow Wave Sleep (stage 3).