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The theme of the Idiopathic Hypersomnia Awareness Week ® 2017 was “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.

Click here to read our media release.

 

We shared the theme of “Research” with the 2017 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.” 
 

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 the 2017 Rare Disease Day are very fitting for the Idiopathic Hypersomnia Awareness Week® because this is the hope of people with Idiopathic Hypersomnia.

The founder of Hypersomnolence Australia  and the Idiopathic Hypersomnia Awareness Week®, Michelle Chadwick was interviewed live on ABC Radio, 5th September 2017. Need someone to understand what Idiopathic Hypersomnia is and what it is like to live with it? Get them to listen to this interview on soundcloud.

You can listen to the IHAW Community Service Announcement here

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

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 go 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 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. You can click here or on the ‘donate’ button on the top of the IHAW Facebook page. 100% of the funds donated via either of these methods go directly to the Idiopathic Hypersomnia Awareness Week®.

 

Michelle Chadwick

Founder

Hypersomnolence Australia and

Idiopathic Hypersomnia Awareness Week®

 

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

Click on the images more information
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


Click here to view the video.

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”

This is a summary of the #IHAW2017 for more images and more information check out the Idiopathic Hypersomnia Awareness Week social media. Facebook - Twitter - Instagram