Idiopathic Hypersomnia Awareness Week 3-9 September 2018
The Idiopathic Hypersomnia Awareness Week® is a registered Trademark in the United States and Australia. It is recognised worldwide as Idiopathic Hypersomnia's most significant annual awareness raising event. We are a non-profit organisation that does not receive funding and we do not charge membership. To allow us to continue to host this very important event we need your help!
Thank you!
The #IHAW2018 was another huge success! We reached hundreds of thousands of people across various social media platforms, our website and through print media and also radio. Thank you to everyone that interacted with (ie: shared, liked and commented) our posts. And a special thank you to those of you that went above and beyond to show your support. Read more here
This Idiopathic Hypersomnia Awareness Week we will be raising awareness of the effect Idiopathic Hypersomnia has on a sufferer’s day to day life and the challenges and limitations of current treatments.
Understanding how a chronic illness affects someone is difficult for anyone that doesn't experience it. Our aim has been to translate the thoughts and feedback shared with us into posters and stories that we hope will help others better understand Idiopathic Hypersomnia. You can read those stories and check out the posters on our 'Patient Perspectives' page.
We have seen the IHAW steadily grow since it began in 2013. Its success shows us that the IHAW is a very important and much needed event for the Idiopathic Hypersomnia community. But we can not do this alone. Raising awareness of Idiopathic Hypersomnia takes a village.
Click here to read how you can help raise awareness.
MEDIA RELEASE
For immediate release 1 August 2018
6th annual international Idiopathic Hypersomnia Awareness Week® runs from 3th through to 9th September.
Idiopathic Hypersomnia (IH), sometimes referred to as Idiopathic Hypersomnolence, is a neurological sleep/wake disorder characterised by excessive sleep and daytime sleepiness.
Most people can feel tired, fatigued and at times, excessively sleepy, particularly when they do not get enough sleep. However what sets people with IH apart is that they experience extreme sleepiness despite getting adequate or typically more than adequate hours of sleep (typically more than 11 hours in a 24 hour period). Their sleep may be deep and uninterrupted but it is not refreshing. Despite extraordinary amounts of good quality sleep people with IH are in an almost constant state of sleepiness.
Idiopathic Hypersomnia can cause a range of symptoms including excessive nocturnal and daytime sleep despite more than adequate good quality sleep, chronic daytime sleepiness, extreme and prolonged difficulty waking up from sleep, accompanied by confusion, disorientation, irritability and poor coordination with an uncontrollable desire to go back to sleep. It can also include automatic behavior ie: performing tasks without consciously knowing it and not remembering you have done them eg: turning off alarm clocks or answering your phone, and cognitive dysfunction (commonly referred to as 'brain fog') ie: problems with memory, automatic behaviour, concentration and attention.
Unlike in other sleep disorders, the sleep in patients with Idiopathic Hypersomnia is normal; there are no disturbances that can account for their symptoms. There is no cure and the medications that are available only assist with some of the symptoms, they do not treat the cause. Idiopathic Hypersomnia has a devastating impact on the ability to work,socialise, stay healthy and live a normal life.
The focus of the 2018 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. As we have in previous years 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. We want people to understand that people with IH need help and practical support to manage their day to day lives.
Idiopathic Hypersomnia Awareness Week® 3-9 September 2018
Facebook
Twitter www.twitter.com/IHAWeek @IHAWeek
Instagram www.instagram.com/ihaweek
We will be using the hashtag #IHAW2018
For information about Idiopathic Hypersomnia visit the Hypersomnolence Australia and Hypersomnia Foundation websites
All media enquiries: Michelle Chadwick ihaweek@gmail.com
- Ends -
Click here to download a copy of our Media Release.
Or click here to share it via our blog
Feel free to download and share the Idiopathic Hypersomnia Awareness Week 2018 Community Service Announcement.
Interested in Idiopathic Hypersomnia Awareness Week® merchandise?
We have a Zazzle store! Read more about it.
Read stories and thoughts shared by people living with Idiopathic Hypersomnia on our Patient Perspectives page
You will also find posters you can share.
Posters to share on social media
IHAW2018 Ambassadors
We are pleased to introduce the 2018 Idiopathic Hypersomnia Awareness Week® Ambassadors. We are fortunate to again have representatives from a few different countries. They bring to the role a range of perspectives and experience. Click here > Let's meet them!