Thank you for supporting the IHAW2017!

The IHAW2017 has been another great success. I am so pleased to see it continue to grow, but it doesn’t do that on its own so I would like to say thank you!

Much appreciation and thanks goes to many people including but not limited to,

- The Idiopathic Hypersomnia patient community. Among the numerous annual awareness days/weeks the Idiopathic Hypersomnia Awareness Week is yours, thank you for helping make sure your annual event has a voice. 

- Everyone who joined and shared the Thunderclap. It was a huge success reaching 347,584 people in 327 cities around the world.

- All the Hypersomnolence Australia (HA) and IHAW Facebook, Twitter and Instagram followers and all the new people that have liked our pages and started following us on Facebook, Twitter and Instagram.

- Everyone that liked, commented on and shared posts and pics across all our social media. This is an easy yet very effective way of helping us raise awareness. The HA and IHAW Facebook, Twitter and Instagram have all been wonderfully active which means we have once again managed to reach many thousands of people.

- The Hypersomnia Foundation for their support and participation and a special thank you to board members Catherine Rye and Diane Powell for your encouragement and support.

- Jenna James, Diana Kimmel and other patients that go the extra mile. Your support is much appreciated.

- Thank you again to Helen Daly for helping us make our idea for the artwork a reality. She did a wonderful job with the design.

- Quinn Eastman for his contribution, ‘Imagine Sleep Drunkenness - IHAW2017’ in the Emory Health Sciences Research Blog, ‘Lab Land’.

- Sleep Review Magazine and all the organisations and professionals that wrote articles, posts and also shared our posts.

I would also like to say a special thank you to all the clinicians-scientists that have been so generous with their time and resources for the IHAW, particularly Professors David Rye, Karel Šonka, Michel Billiard and Yves Dauvilliers. But also, much appreciation to all the researchers, including those I have mentioned that have dedicated so much of their careers to Idiopathic Hypersomnia and disorders of hypersomnolence. While their research studies are vital to unravelling the mystery of hypersomnia, so too is the time they spend teaching others and passing their knowledge on. It is encouraging to know that almost all the current researchers dedicated to Idiopathic Hypersomnia have been students of other scientists that have been equally passionate about disorders of hypersomnolence and that they are continuing that tradition by mentoring others. There is still so much to learn about neurological sleep disorders, particularly disorders of hypersomnolence so it is extremely important that young scientists are encouraged to study them. 

My final word is always to thank my husband Glenn and my children Jack and Lara. Without their continued support and financial contribution, I could not do the work I do for Hypersomnolence Australia and the IHAW would not be possible. As I’ve said before neither HA or the IHAW have a team of busy workers behind them and we do not receive funding so I can’t pay people to do the work and I can’t pay for advertising or promotion. The continued success of the IHAW relies on your support. I will be posting some information about how you can get involved on the IHAW Facebook page early in the new year. Please also consider donating, every little bit helps us keep the awareness week going, at least at the current standard. You can click on this link or on the ‘donate’ button on the top of the IHAW Facebook page.

https://form.jotform.co/Hypersleep/ihaw-donation-form

Michelle Chadwick
Founder
Hypersomnolence Australia and 
Idiopathic Hypersomnia Awareness Week®

*Hypersomnolence Australia is a Not for Profit Registered Health Promotion Charity

We end IHAW2017 on a somewhat positive note.

The World Sleep Congress (WSC), hosted by the World Sleep Society, October 7 to 11, 2017 is in Prague.

Why is this meeting significant for idiopathic hypersomnia?

Prague is the birthplace of renowned neurologist, Dr. Bedřich Roth (1919-1989). Roth was responsible for describing Idiopathic Hypersomnia (the first cases were described more than 60 years ago). Roth's first book on narcolepsy and hypersomnia was published 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.

You can read more about the history of how Idiopathic Hypersomnia was described as told by his student and later collaborator, Soňa Nevšímalová below.

Dr Nevšímalová worked extensively with Roth (she was also on Dr Mignot's team that discovered hypocretin deficiency in narcolepsy). She will give a keynote speech on hypersomnia; 'Central Hypersomnias Through the Eyes of Time.'

There will also be a symposium.

“Idiopathic hypersomnia: a neglected disorder”

Chair: I. Arnulf, France

Speakers: I. Arnulf, France;

K. Sonka, Czech Republic; D. Rye, United States; G. Mayer, Germany

The symposium will comprehensively review the latest advances in understanding, diagnosing and treating idiopathic hypersomnia, derived from large series of patients studied in tertiary referral centers.

There will also be a daylong course touching on aspects of sleep medicine and research. It will include a discussion on Idiopathic Hypersomnia by Dr. Rye.

“This course will integrate research and clinical practice, bringing together basic science and clinical advances, putting together the best of a ‘year in review’ and a ‘basic science/methods’ update for the sleep physician.” The span of topics should include technology, controversial areas, and recent (2-3 years) literature. The course will aim to provide a substantial sweep across multiple topic areas, nearly a data blitz, and reach into areas outside the traditional sleep journals but of direct relevance to the practice and science of sleep medicine." David Rye, MD, PhD

Following are excerpts from Soňa Nevšímalová’s chapter, “Idiopathic Hypersomnia, Sleep Medicine: A Comprehensive Guide to its Development, Clinical Milestones, and Advances in Treatment,” pp 223-228:

“The first author to identify the clinical differences between narcolepsy and other types of hypersomnia was Bedrich Roth, a Czech neurologist, neurophysiologist, and sleep researcher. In 1956, he published a detailed description of difficulties in awakening – sleep drunkenness, recognized later as a leading clinical symptom of idiopathic hypersomnia. He identified sleep drunkenness as a symptom (inertia connected with prolonged nocturnal sleep), as a syndrome (characterized by patients suffering from prolonged nocturnal sleep, marked difficulty awakening, and daytime sleepiness), and as an independent nosological entity.

In that paper he described 20 patients with sleep drunkenness mostly of the independent form (11 patients). The disease usually began in younger age (between 15 and 33 years); the patients often had positive family history (5 out of 11 families) and showed features of depression. The most characteristic symptom consisted of prolonged deep nocturnal sleep accompanied by sleep drunkenness during waking and prolonged daytime naps generally lasting for 1-3 hours or more, but occasionally less….Sleep drunkenness was also noted in 6 out of 127 narcoleptic patients.”

Dr. Nevšímalová notes that Bedrich Roth proved that idiopathic hypersomnia existed beyond the city of Prague:

Around 1960 Bedrich Roth accepted an invitation from Allan Rechtschaffen to visit his sleep laboratory in Chicago and examine patients with sleep drunkenness in the USA. The birth of a new clinical entity supporting polysomnography (PSG) findings seemed rather amusing (sic) there. When Bedrich Roth arrived, everybody in the USA believed that this disease existed only in Prague. However, Roth arranged a short interview (at) the local television explaining the clinical symptoms of the disease (long nocturnal sleep with difficulty awakening and long-lasting daytime naps) and asked TV viewers for cooperation. Everybody in the Chicago team was really surprised to see, exactly then and there, the TV show lineup of people waiting to be examined by Bedrich Roth. After a clinical interview, he chose 10 patients and the first PSG findings of this ailment were published in patients with idiopathic hypersomnia who underwent PSG recording for two nonconsecutive nights…Three years later, a complete clinical description of hypersomnia with sleep drunkenness (58 cases), enriched by long-term nocturnal monitoring (9 cases) appeared in the literature giving a clear picture of this clinical entity.

Sleep drunkenness was characterized by difficulty awakening accompanied by confusion, disorientation, poor motor coordination, slowness, and repeated dozing off. Patients reported that these symptoms occurred almost every morning, and nearly all reported abnormally prolonged sleep.” 

Click here to read a tribute to Bedřich Roth written for the IHAW2015  

Idiopathic Hypersomnia

Click here for a summary of how we have gone from the identification of Idiopathic Hypersomnia to where we are now. Drawn from nearly 60 references, including at least 40 peer reviewed studies 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.

*If you have been diagnosed with Narcolepsy Type 2 (without cataplexy) you might be interested in this too.*

 

 

Dr Bhatia and Anne discuss Idiopathic Hypersomnia

In this video on GMTV UK, Dr Anu Bhatia is spot on with the 3 main symptoms of the complete form of Idiopathic Hypersomnia. Prolonged nighttime sleep (typically 12-14hrs), difficultly waking up and feeling unrefreshed and disorientated (sleep drunkenness) and excessive daytime *sleeping* - actually sleeping during the day not just tired or sleepy. Anna the young women in the video who is diagnosed with Idiopathic Hypersomnia says something I'm sure everyone with Idiopathic Hypersomnia can relate to:

"It's the everyday reality that I just feel I'm not getting as much out of life as I could be, because I'm tired or because I'm sleeping for half the day where I would rather be doing something else." - Anne

Thank you for caring for someone with Idiopathic Hypersomnia

"....If you are one of those special people that loves and cares for some with Idiopathic Hypersomnia – Thank you! It’s not easy caring for someone with Idiopathic Hypersomnia. We can be irritable, disorientated, angry, frustrated, sleepy, disinterested and we can be asleep – a lot. Thank you for understanding that it is our condition, not us. Thank you for not taking it personal when we lash out at you when you are trying to wake us for the 100th time for something you know we need to be awake for. Thank you for saying “why don’t you go and have a sleep” when you can see that we are barely awake rather than say “you’re lazy! All you do is sleep!”. Thank you for everything else I haven’t mentioned but above all thank you for believing in us. Not being believed is a burden no one fighting chronic illness should have to bare.".... Click here to read more

Idiopathic Hypersomnia Awareness Week on ABC Radio

The founder of Hypersomnolence Australia and Idiopathic Hypersomnia Awareness Week, Michelle Chadwick was interviewed live on ABC Radio yesterday, 5th September.

Know someone that doesn't understand what Idiopathic Hypersomnia is and what it is like to live with it? Get them to listen to this >> 

https://soundcloud.com/hyper_sleep/on-air-clip-idiopathic-hypersomnia-abc-radiomp3

Imaging Sleep Drunkenness: IHAW2017

Principal investigator Dr Lynn Marie Trotti, with senior research associate Prabhjyot Saini, preparing for a test run earlier this year. Photo courtesy of Diana Kimmel.

Quinn Eastman Science Writer at Lab Land, The Emory Health Sciences Research Blog writes “At some point, everyone has experienced a temporary groggy feeling after waking up called sleep inertia. Scientists know a lot about sleep inertia already, including how it impairs cognitive and motor abilities, and how it varies with the time of day and type of sleep that precedes it. They even have pictures of how the brain wakes up piece by piece.

People with idiopathic hypersomnia or IH display something that seems stronger, termed “sleep drunkenness,” which can last for hours. Czech neurologist Bedrich Roth, the first to identify IH as something separate from other sleep disorders, proposed sleep drunkenness as IH’s defining characteristic…” Click on the link to read more http://www.emoryhealthsciblog.com/imaging-sleep-drunkenness-ihaw2017/

Thank you for caring for someone with Idiopathic Hypersomnia

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....

The term “excessive daytime sleepiness” (EDS) is often used interchangeably with hypersomnia and idiopathic hypersomnia however these two terms do not mean the same thing. Like 'hypersomnia of unknown origin' EDS is not a disease or disorder. Understanding the meaning of hypersomnia is important... Read more here

Correct Terminology Matters

Do people with Idiopathic Hypersomnia really sleep longer than normal? Yes they do!

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 duration.
"Hypersomnia means sleep is excessive in depth, deep sleep, can’t wake people up, and excessive in duration, it lasts too long”....

Hypersomnia is the very essence of Idiopathic Hypersomnia, it is its defining feature. Most people can feel tired, fatigued and even at times, excessively sleepy however what sets people with Idiopathic Hypersomnia apart is that they experience all that too, and usually at a much higher extreme, but they also sleep excessively and their sleep is typically deep and long in duration... Click on the link to read more http://bit.ly/2xFf1NW

A tribute documentary to Prof. Bedrich Roth

Roth identified and described Idiopathic Hypersomnia as a separate disease entity after years of extensive and meticulous study of a large number of patients from the mid 1950’s until the end of the 70’s. This led to the naming of Idiopathic hypersomnia and its acceptance as an independent clinical entity. It was included in the first ICSD, Diagnostic Classification of Sleep and Arousal Disorders in 1979. It includes interviews with Prof. Jan Roth, Bedrich Roth's Son and Prof. Soňa Nevšímalová, a student and then fellow colleague of Roth.
*Video resource from the World Association of Sleep Medicine (WASM) in promotion of World Sleep Day.

You can also read about Roth’s extraordinary contribution to neurological sleep research and how he identified Idiopathic Hypersomnia as being an independent and unique medical condition in “Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia” written for the 2015 Idiopathic Hypersomnia Awareness Week on the page "Bedrich Roth Tribute" in our menu

Apples and Oranges

Hypersomnia = Consumed by Sleep     Narcolepsy = Seized by Sleep

Article: “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.” - Khan Z, Trotti LM.

This article reviews three central disorders of hypersomnolence (CDH), which include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. If you haven't watched 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, click here >> This video is a fascinating examination of semantics and the signs and symptoms of hypersomnia.

What’s in a Name? Understanding the Origins of the Terminologies for the Family of Hypersomnias

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 too much sleep, excessive sleep! But narcolepsy is put under the label of hypersomnia???? That’s where the problem starts, and where the problem perpetuates….. The naming problem begins with the continued recognition of genuine hypocretin deficient, type 1 narcolepsy as a hypersomnia” Dr David Rye.

http://www.hypersomniafoundation.org/whats-in-a-name-understanding-the-origins-of-the-terminologies-for-the-family-of-hypersomnias/

Current medications are not treating all of the symptoms of Idiopathic Hypersomnia

This image is from the Hypersomnia Foundation’s 2017 Regional Conference video. It shows data from their CoRDS registry. It shows the current symptoms people with idiopathic hypersomnia experience at least once every.

Dr Trotti said of this image “...people are still dealing with the same symptoms every single day (despite medication)…This is not a randomised trial and so there are some limitations but this is a real wake up call. If we didn’t already believe that the medicines we are using are not treating all of the symptoms of this disease (idiopathic hypersomnia) I think that stands out pretty starkly”

Research is important for Rare Diseases

 

The theme of Idiopathic Hypersomnia Awareness Week ® 2017 is “Research”

There are many misperceptions about idiopathic hypersomnia. This combined with inappropriate and unreliable testing methods has resulted in idiopathic hypersomnia being one of the most misdiagnosed sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for the same reason is immeasurable. Further research is desperately needed in all areas, ie: etiology, epidemiology, the genetic aspects of the disease and to identify biomarkers so that scientists can develop better more appropriate diagnostic tools and treatments. 

We share the theme of “Research” with this year’s Rare Disease Day.

“Imagine going to see your doctor only to be told that they don’t know what is happening to your body, that they don’t know what your disease is. Imagine that they can diagnose your disease but tell you that there is no cure or treatment available. Or that the treatment available is not fully effective but just the best possible option. You don’t know how you or your loved one will manage life from one day to the next, nor how the disease will affect your work or school life. This is the reality for many rare disease patients.” - Rare Disease Day 2017.

This is the reality for people with Idiopathic Hypersomnia.

“Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give a correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments and in some cases a cure. Research is key. It brings hope to the millions of people living with a rare disease across the world and their families.” - Rare Disease Day February 28th 2017

These words from this years Rare Disease Day are very fitting for the Idiopathic Hypersomnia Awareness Week because this is the hope of people with Idiopathic Hypersomnia.

Thank you to everyone that supported our Thunderclap. With your help we reached 347,584 people in 327 cities around the world!

Radio Producers - Community Service Announcement

Click here to listen to our community service announcement on Soundcloud or here to download a copy to use in media. If you use our CSA please drop us an email at ihaweek@gmail.com to let us know.  

Campaign: Idiopathic Hypersomnia Awareness Week®
Running Dates: Now till 10th Sep 2017
Contact: Michelle Chadwick - ihaweek@gmail.com

MEDIA RELEASE

For immediate release 1 August 2017

Idiopathic Hypersomnia Awareness Week® – Research Changes lives  

5th annual international Idiopathic Hypersomnia Awareness Week® runs from 4th through to 10th September. This year our focus is on Research

Idiopathic Hypersomnia is a neurological sleep/wake disorder. It can cause a range of symptoms including excessive nocturnal and daytime sleep despite more than adequate good quality sleep, chronic daytime sleepiness, persistent ‘brain fog’, sleep drunkenness (i.e; severe sleep inertia): extreme and prolonged difficulty awakening from sleep, confusion, disorientation, irritability and poor coordination with an uncontrollable desire to go back to sleep. It can also be accompanied by automatic behavior (performing tasks without consciously knowing it and not remembering you have done them eg: turning off alarm clocks or answering your phone).

Why is research and knowledge so important? 

  • Very little is known about the cause of Idiopathic Hypersomnia so there is no cure. 
  • There is no definitive test for Idiopathic Hypersomnia, current testing methods are unreliable.
  • There are no approved medications for idiopathic Hypersomnia and the medications that are used are not ideal particularly as they don’t target the cause.
  • Current medications only partly assist managing symptoms and they are often not effective long term. 
  • 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.  
  • Many people with Idiopathic Hypersomnia can go for years undiagnosed.
  • Due to a lack of knowledge and understanding of Idiopathic Hypersomnia some people are misdiagnosed and are given inappropriate medications.

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 reason 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.  

Idiopathic Hypersomnia Awareness Week® 4-10 September 2017 – Research Changes Lives

We will be using the hashtags #IHAW2017 and #ResearchChangesLives

Facebook  www.facebook.com/IHAwarenessWeek

 Twitter www.twitter.com/IHAWeek @IHAWeek

Instagram www.instagram.com/ihaweek

For information about Idiopathic Hypersomnia visit Hypersomnolence Australia or the Hypersomnia Foundation  

All media enquiries: Michelle Chadwick ihaweek@gmail.com

- Ends – 
Pdf copy of the Media Release is available to download - see below

MEDIA RELEASE 2017 pdf

Download a copy of the IHAW media release and share it with your local media.

Add a Twibbon!

Show your support - Click here to add a Twibbon to your social media profile pic's  http://twibbon.com/support/ih-awareness-week-2016/