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World Sleep Day 2019

With slogans like “Good sleep is a reachable dream”, “When Sleep is Sound, Health and Happiness Abound” and “Restful Sleep, Easy Breathing, Healthy Body” it is clear that the focus of World Sleep Day has always been on the importance of getting a good night’s sleep. And quite rightly so, lack of sleep or poor quality sleep is known to have a significant negative impact on our health. However research also shows that prolonged time spent in bed and excessive sleep is equally damaging to our health. Unfortunately for some people like those with the neurological sleep/wake disorders Idiopathic Hypersomnia and Kleine–Levin syndrome (KLS) sleeping excessively is not a choice. We wrote about this for World Sleep Day 2017, you can read our article here. The purpose of that article "Effects of Excessive Sleep and Prolonged Bedrest" was to raise awareness of the fact that people with Idiopathic Hypersomnia need to sleep more than 10 hours (and usually more) in a 24 hour period. So if doctors and researchers know there are serious repercussions related to prolonged bedrest/excessive immobility and sleeping excessively then what are they doing about it for the group of people that simply *cannot* function on less than 10+ hours sleep? The attitude many people with Idiopathic Hypersomnia get from their doctors is "you have idiopathic hypersomnia, no its no big deal, it's not life threatening, it's not doing you any harm like say a *serious* (some even say a "real") medical condition would" however according to scientific research, that attitude is clearly very wrong and something obviously needs to be done about it. The point of our post was not to say sleeping more than 9 hours is “bad for you”. We know that people with Idiopathic Hypersomnia simply have no choice but to sleep excessively and therefore be immobile for lengthy periods. What we did was point out that there is research that says regularly sleeping 9 hours or more puts you at a higher risk of dying young and this certainly concerns us which is one reason why we believe Idiopathic Hypersomnia should be taken more seriously and not dismissed as something that is insignificant or worse that others would envy. There is absolutely nothing to envy about needing to sleep excessively. You miss out on so much of life. However it's worse than that. There is nothing to envy about needing to sleep excessively and then finding it extremely difficult to wake up and when you do wake up you feel like you have had no sleep at all - and all this, and your sleep quality is good! There is no known reason you should be experiencing this continuous hell. In simple terms, imagine what it would be like to sleep solidly without any disturbance for 12+ hours and then wake up feeling and functioning exactly the same way you do if you had 3-4 hours sleep. Still envious? Idiopathic Hypersomnia is not simply "you're tired all the time and we don't know why". Many (including doctors) incorrectly think Idiopathic Hypersomnia refers to any case of excessive daytime sleepiness (EDS) that cannot be explained by another preexisting medical condition, sleep disorder or by lifestyle or behaviour. This is not correct. It is a neurological sleep/wake disorder characterised by a number of symptoms and clinical features. EDS is just one of them. Idiopathic Hypersomnia was defined by Czech neurologist Bedrich Roth more than 60 years ago starting with his first monograph; "Narcolepsy and hypersomnia from the aspect of physiology of sleep (Narkolepsie a Hypersomnie S. Hlediska Fysiologie Spanku – 1957)" . Roth’s years of extensive research that led to his description of Idiopathic Hypersomnia as a separate disease entity and was accepted and included in the first ICSD (International Classification of Sleep Disorders), the Diagnostic Classification of Sleep and Arousal Disorders in 1979. Since then it has been recognised as a “Rare Disease” and is included in the Genetic and Rare Diseases Information Center (GARD) register and Orphanet. There has been various papers, studies, and book chapters published on Idiopathic Hypersomnia over the years. You can read a review of them here. While we may not know the cause of Idiopathic Hypersomnia research certainly points to the complete form of Idiopathic Hypersomnia being an independent clinical entity. These people need to sleep excessively. Their sleep quality is good - yet they do not feel refreshed no matter how much they sleep. Their symptoms are debilitating. And yet as one researcher has said "they are the most under-served population in the entire sleep community". Please join us in raising awareness of Idiopathic Hypersomnia. Click here for our Idiopathic Hypersomnia Factsheet. Hypersomnolence Australia are official #WorldSleepDay delegates Please share our awareness images below:

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