Worldwide Idiopathic Hypersomnia Awareness Week. Find some easy ways that you can help raise awareness.

Every year on what would be his birthday, March 23rd, we honour a man who dedicated his life to medicine and science. Prof Bedrich Roth (1919-1989) was a renowned neurologist responsible for identifying and naming Idiopathic Hypersomnia. His seminal works over many years on narcolepsy and hypersomnia have left an indelible mark on the history of sleep medicine. Roth is credited as being a true pioneer in the area of narcolepsy and hypersomnia due to the valuable epidemiologic

There has been some concern about Dr Hugh Mestitz's imminent retirement. For those that don't know Dr Mestitz has treated people with narcolepsy and idiopathic hypersomnia at Hobart Royal Hospital for many years and the fear is that with his retirement people will need to travel to Melbourne for their ongoing treatment and care. I contacted Dr Mestitz today and I can assure you that he is not going to leave any of his patients in the lurch. He has assured me that no one wi

On 23 November I wrote a post Inquiry into Sleep Health Awareness in Australia. That announced that the House of Representatives Standing Committee on Health, Aged Care and Sport had commenced an Inquiry into Sleep Health Awareness in Australia. The Committee invited submissions from the public to its inquiry. As the Executive Director of Hypersomnolence Australia and Director of Sleep Disorders Australia, I was invited to the public hearing that was held at Parliament House

Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better

On the 6 October we shared a video on our social media of Dr. David Rye’s presentation at the 2018 Hypersomnia Foundation Conference. If you missed it you can view it here Dr Rye spoke of the progress on many fronts including awareness, diagnostics and causes. He highlighted the increased attention at international sleep conferences including the World Sleep Congress 2017 where there was a very well attended symposium on Idiopathic Hypersomnia. Prof Karel Sonka used my Idiopa

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. It doesn’t go unnoticed so I apologise if I don’t mention you here. Thank you to this year’s ambassadors and to our five genero

Interested in Idiopathic Hypersomnia Awareness Week® merchandise? We have a Zazzle store! We created a Zazzle store because people ask us "Is there IH Awareness Week merchandise to buy?". We keep the prices as low as we can so that people have IHAW items to buy. We do not make any profit (we have made none to date*). If we did make any money from our Zazzle store it will go directly to keeping the Worldwide Idiopathic Hypersomnia Awareness Week® going. We can create just abo

Update in this research below. Idiopathic hypersomnia (IH) is a poorly understood disorder, characterised by excessive sleep and daytime sleepiness. It has a severe impact on quality of life. An article published in the Sleep Research Society’s journal, SLEEP reports the first neuroimaging study of Idiopathic Hypersomnia, showing altered brain perfusion in regions modulating sleep-wake states. “These preliminary findings suggest that idiopathic hypersomnia is characterized b

Understanding how a chronic illness affects someone is difficult for anyone that doesn't experience it so for the 2018 Idiopathic Hypersomnia Awareness Week® we wanted to do our best to show people what living with IH is like through the thoughts and stories of people living with Idiopathic Hypersomnia. Idiopathic Hypersomnia tired is not normal people tired. "To start with when normal people are tired it’s generally because they are sleep deprived or their sleep quality is