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History of the Idiopathic Hypersomnia Awareness Week 2013-2015
The first annual Idiopathic Hypersomnia Awareness Week® was launched and hosted by Hypersomnolence Australia in September 2013. It was a month long awareness campaign focused on raising awareness of Idiopathic Hypersomnia as much as we could in every area that it was necessary. This was a big job. Idiopathic Hypersomnia was barely mentioned on the internet much less in the general public.
The Idiopathic Hypersomnia Awareness Week® was started by the founder of Hypersomnolence Australia, Michelle Chadwick. She was interviewed by Ola Nafen from Community Connect 2MFM radio about Idiopathic Hypersomnia, her journey to diagnosis and why she founded Hypersomnolence Australia. You can listen to the interview here
Following on from that the 2014 theme was raising awareness within our own communities. The very low level of public awareness and the misinformation about Idiopathic Hypersomnia within the medical community leads to stigma for many patients so they often keep their diagnosis to themselves or only share it with close family or friends. The isolation and the burden of not sharing important information about one’s health contributes to making the symptoms of Idiopathic Hypersomnia more difficult to manage. The aim in 2014 was to help support those who felt unable to speak about their diagnosis, particularly in areas where they were being discriminated against or felt judged and isolated.
The 2015 Awareness Week was all about education. We found that raising awareness of Idiopathic Hypersomnia required educating not only the public but also sections of the medical community. Too many people were under the impression that Idiopathic Hypersomnia simply meant a patient was sleepy but their doctor didn’t know why, that Idiopathic Hypersomnia literally meant sleepy with no known cause. This is not accurate and I showed that by presenting a detailed tribute to Bedřich Roth
Roth was a renowned neurologist responsible for identifying and naming Idiopathic Hypersomnia. His seminal works over many years on narcolepsy and idiopathic hypersomnia have left an indelible mark on the history of sleep medicine. 2015 marked the 35th anniversary of Roth’s classic text Narcolepsy and Hypersomnia (1980 S. Karger; NY, NY). The book Narcolepsy and Hypersomnia was published in English in 1980 and is an accumulation of Roth’s work spanning more than 30 years. In fact, it is officially Roth’s second monograph on narcolepsy and hypersomnia. The first volume was published 23 years earlier 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. I spoke to several highly regarded neurological sleep physicians including those that worked closely with Roth. They gave me an insight into how Idiopathic Hypersomnia was identified and documented. They also shared with me their thoughts on more current research and issues that patients with Idiopathic Hypersomnia face due to the lack of understanding of Idiopathic Hypersomnia within areas of the medical community.
Images shared during #IHAW2015
These are direct quotes from conversations Michelle Chadwick had with the scientists when researching for her tribute "Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia”