Every year we say we have come a long way and I'm proud to say this year has been no different. I never expected HA to make the impact it has in such a short time. Some things have taken a little longer to achieve than others but we have come to appreciate that all organisations need time to grow and that with time comes experience and knowledge.
So What's New?
We are so excited to have a brochure for Idiopathic Hypersomnia (IH). Our brochure was written by me however it w
This is a comprehensive review of how we have gone from the identification of Idiopathic Hypersomnia to where we are now. Drawn from 56 references, including over 40 peer-reviewed papers and book chapters on Idiopathic Hypersomnia and Narcolepsy that span more than 6 decades as well as numerous personal conversations with the world's leading Idiopathic Hypersomnia researchers. This review is also relevant if you are treating patients with Narcolepsy Type 2 (without cataplexy)
Dr. David Rye’s 2013 session at the Narcolepsy Network conference entitled: What’s in a Name? Understanding the Origins of the Terminologies for the Family of Hypersomnias. This video is a fascinating examination of semantics and the signs and symptoms of hypersomnia.
“Narcolepsy, real narcolepsy, narcolepsy with cataplexy is under the Hypersomnias, but narcolepts don’t sleep anymore over 24hrs than anyone else does, that’s been shown in numerous studies…. Hypersomnia means
*First published September 2015 I would like to take this opportunity during Idiopathic Hypersomnia Awareness Week 2015 to acknowledge the 35th anniversary of the classic text Narcolepsy and Hypersomnia (1980 S. Karger; NY, NY) and to pay tribute to the extraordinary contribution to neurological sleep research by renowned neurologist Bedřich Roth. The book Narcolepsy and Hypersomnia was published in English in 1980 and is an accumulation of Roth’s work spanning more than 30 y
Do you feel tired all the time no matter how much sleep you get? Daytime sleepiness has a significant impact on quality of life. People with daytime sleepiness struggle with social, academic and work demands,they are at risk of motor vehicle and workplace accidents and generally have poorer health than comparable adults. Accurate diagnosis is important, not only because of the negative impacts of sleepiness and its root causes on health and social function but because excessi
The terms 'hypersomnia of unknown origin' and 'excessive daytime sleepiness' are not synonymous with idiopathic hypersomnia (they do not mean the same thing). Idiopathic Hypersomnia is an unfortunate name. This is because the word “idiopathic” means ‘unknown cause’ and this can lead people to assume it is merely a symptom – the symptom of being ‘sleepy’ and doctors don’t know why. This is not correct. Idiopathic hypersomnia was identified and described as a separate disease e
One of the biggest frustrations for someone with Idiopathic Hypersomnia is that some people don't believe they actually sleep excessively, or worse that Idiopathic Hypersomnia isn't "real" ... So, do people with Idiopathic Hypersomnia really sleep longer than normal? The answer is yes. The word “hypersomnia” actually means excessive sleep, not “sleepy”, not “tired” and not even “excessive daytime sleepiness”, but actual sleep that is excessive in depth and excessive in durati
Over the past four decades, Prof. Michel Billiard has published numerous articles on narcolepsy with cataplexy and other hypersomnias of central origin, particularly Kleine-Levin Syndrome and Idiopathic hypersomnia. I spoke with Prof Billiard for the tribute “Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia” that I wrote for the Idiopathic Hypersomnia Awareness Week 2015. The theme for the 2017 awareness week is research so I’m l