Awareness Week 2015

THANK YOU FOR SUPPORTING IDIOPATHIC HYPERSOMNIA AWARENESS WEEK 2015

We would like to thank everyone that showed their support during Idiopathic Hypersomnia Awareness Week 2015 including but not limited to;

- Everyone that contributed to all of the action on Facebook, Twitter and LinkedIn by joining the Facebook event, posting encouraging comments, likes, shares, tweets and retweets etc.

- All of our Facebook & Twitter followers and also all of the new people that have liked our page and started following us on Twitter.

- People who shared their stories and photos.

- Adam from Patient Talk for his continued support. Also Sree at Sleep Review Magazine and all of the organisations and professionals that wrote articles and shared information about Awareness Week or published our Tribute.

- Mel Christiansen for her work building our new database for our patient registry and Scott Heath for volunteering his time to transcribe the World Sleep Day video tribute to Bedrich Roth.

- Catherine Rye and Tiffany Townsend for you continued support and encouragement.

Finally we would also like to say a very special thank you to all of the clinicians and researchers that are always so generous with their time and resources, particularly Professors Roger Broughton, Michel Billiard, Karel Šonka, Sona Nevšímalová, David Rye and Isabelle Arnulf. We have already learnt so much from them and look forward to working with them in the future.

When Hypersomnolence Australia launched the first international Idiopathic Hypersomnia Awareness Week in 2013 we actually dedicated a whole month to raising awareness because it was long overdue. It is difficult for many reasons to discuss your diagnosis with family and friends much less employers and other people in your boarder community so in 2014 the focus was on raising awareness within our own communities. This year the theme was education.


“Education is the most powerful weapon which you can use to change the world” –Nelson Mandela


There are many misconceptions and misinformation about idiopathic hypersomnia. We know that without a proper understanding of the disease it makes changing the way the world perceives it impossible. We spoke to a number of health care professionals from around the world including clinicians and researchers that have dedicated a lot of their career to hypersomnia and narcolepsy (some of those we have mentioned above). One of the questions we asked them was “What is it about Idiopathic Hypersomnia that you feel is important for people to know?” All of the respondents included at least 2 or more of these points in their answer;

- idiopathic hypersomnia is often misdiagnosed and misinterpreted. Education of physicians and sleep specialists is imperative.

- the exact prevalence is unknown but is thought by many to be as high as Narcolepsy.

- further research is required on the genetic aspects of the disease.

- idiopathic hypersomnia (IH) is a "true" and disabling neurological sleep disorder. People with IH are not lazy, sleepiness is a symptom of the disease and is usually not relived by sleep or medications.

- there are no approved medications specifically for Idiopathic Hypersomnia. Medications used to treat Narcolepsy including stimulants and wake-promoting medications are prescribed to counter daytime sleepiness however there are no medications that assist with the extreme difficulty waking up or the sleep drunkenness. Stimulant and wake promoting medications can be helpful to relieve sleepiness for some patients however for many they are not effective or appropriate. New and appropriate therapies are needed.

- the impaired cognitive ability, the excessive sleep, and continuous feeling of never being fully awake profoundly affects work, education, and quality of life and leaves sufferers at risk of potentially life-threatening accidents.

- ICSD3 combined idiopathic hypersomnia is not supported by data. It is a step back in the definition of idiopathic hypersomnia as it potentially encompasses a variety of different diseases.

- current testing methods (MSLT) and diagnostic criteria is inappropriate. There is an urgent need for biological markers.

We also see these issues in the work that we do so we look forward to working with these professionals and others as we continue to try to address these problems.

Moving forward Hypersomnolence Australia will be focusing on projects that are centred on making the most of life with idiopathic hypersomnia. How much we are able to achieve depends on your support. If you have a talent you think Hypersomnolence Australia could use or a little time to spare let us know because we are always short on volunteers. Donations are also always needed (we charge no membership and receive no funding).

Donations can be made through our ANZ bank account in the name of, Hypersomnolence Australia

BSB: 014286 A/C 210329584
or thru our PayPal account: admin@hypersomnolenceaustralia.com

*All donations are tax deductible as we are a registered NFP Health Promotion Charity

Thank you
Michelle & Sarah Cool

  


Welcome to the 3rd annual Idiopathic Hypersomnia Awareness Week!

7-13th September 2015

Hypersomnolence Australia launched the first international Idiopathic Hypersomnia Awareness Week in 2013 with a radio interview discussing the importance of community awareness. This year we will be focusing on education with a written tribute to the renowned Czech neurologist Bedrich Roth who was responsible for identifying and naming Idiopathic Hypersomnia.

This year marks the 35th anniversary of Roth's classic 1980 text Narcolepsy and Hypersomnia (S. Karger; NY, NY). In our tribute "Bedrich Roth, His Life's Work and the 35th Anniversary of the Book "Narcolepsy and Hypersomnia" we document Roth's significant contribution to the pioneering pathophysiology and epidemiological study of narcolepsy and Hypersomnia. Narcolepsy and Hypersomnia contributed to the English literature for the first time the largest most meticulously followed series of all the then known neurological sleep disorders.

The book Narcolepsy and Hypersomnia "included not only Roth's remarkable progress having worked on the topic for over a quarter century but also citation of the world-wide publications on these interesting diseases. Indeed it made clear that Professor Roth was the first neurologist to specialize more or less exclusively in the area of narcolepsy and the hypersomnias." Prof Roger Broughton

We have been discussing Roth's life work, his book and the current issues with regards to idiopathic hypersomnia with sleep researchers and clinicians throughout the world including Professors Roger Broughton, Michel Billiard, Karel Sonka, Sona Nevsimalova, Isabelle Arnulf and David Rye.

It is clear that:

- idiopathic hypersomnia is often misdiagnosed and misinterpreted. Education of physicians and sleep specialists is imperative.

- Current testing methods (MSLT) and diagnostic criteria is inappropriate. There is an urgent need for biological markers.

- ICSD3 combined idiopathic hypersomnia is not supported by data. It is a step back in the definition of idiopathic hypersomnia as it potentially encompasses a variety of different diseases.

- The exact prevalence is unknown but is thought by many to be as high as Narcolepsy.

- Further research is required on the genetic aspects of the disease.

- idiopathic hypersomnia (IH) is a "true" and disabling neurological sleep disorder. People with IH are not lazy, sleepiness is a symptom of the disease and is usually not relived by sleep or medications.

- There are no approved medications specifically for Idiopathic Hypersomnia. Medications used to treat Narcolepsy including stimulants and wake-promoting medications are prescribed to counter daytime sleepiness however there are no medications that assist with the extreme difficulty waking up or the sleep drunkenness. Stimulant and wake promoting medications can be helpful to relieve sleepiness for some patients however for many they are not effective or appropriate. New and appropriate therapies are needed.

- The impaired cognitive ability, the excessive sleep, and continuous feeling of never being fully awake profoundly affects work, education, and quality of life and leaves sufferers at risk of potentially life-threatening accidents.