The history of Idiopathic Hypersomnia Awareness Week thus far….
The first annual International 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. Following on from that 2014 the 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 we showed that by presenting a detailed tribute to Bedrich 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.
The theme for 2016 is “Improving quality of life”, this follows on from Hypersomnolence Australia’s campaign “Help us change the prognosis”.
We know that an average person sleeps 8 hours a night which means, if they live to the age of 75 they will spend one third, or 25 years of their life asleep. That means that people with Idiopathic Hypersomnia can spend as much as 50 of their 75 years asleep and the remaining 25 years fighting to wake up and struggling to stay awake! This naturally provides its own set of issues completely apart from the symptoms of the disorder. Idiopathic Hypersomnia is a lifelong debilitating disorder, often profoundly affecting every area of life including education, employment and relationships. As a result of this and the stigma often attached to Idiopathic Hypersomnia it is not uncommon for patients to suffer psychologically including feeling isolated, and at times depressed and socially anxious.
Because very little is known about the cause of Idiopathic Hypersomnia so there is no cure. There are no medications specifically approved and the medications that are used to counter the daytime sleepiness are not ideal, they don’t target the cause and in some cases they are not appropriate at all. In most cases they only assist a patient to manage their symptoms and are often only effective for a short time. Unfortunately 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. Being diagnosed with Idiopathic Hypersomnia can however provide sufferers with some relief. They can finally prove to their critics that they are not lazy, that they do not choose to sleep excessively and that they do not do anything to contribute to their sleepiness. However the prognosis clearly is not good and finding this out can be very confronting, and very lonely.
The 2016 Idiopathic Hypersomnia Awareness Week is all about raising awareness of the need to acknowledge the impact Idiopathic Hypersomnia has on a patient’s life and how the consequences of that can make the symptoms more difficult to manage. We believe the key to improving quality of life is by taking a holistic* approach to treatment. We want to emphasise the importance of the support and understanding of family, friends and doctors in the overall wellbeing of those with Idiopathic Hypersomnia and we want people to understand that patients need help and practical support to manage their day to day lives.
*What is a holistic approach?
It means taking into consideration all the parts that make up a person’s life eg: physical, emotional, mental and spiritual. It’s the concept that the human being is multi-dimensional so for you to perform at your best all areas of your life need to be in good shape. It is very easy for someone with Idiopathic Hypersomnia to neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally and psychologically, as well as physically.