MEDIA RELEASE - IDIOPATHIC HYPERSOMNIA AWARENESS WEEK® 2017
For immediate release 1 August 2017
Idiopathic Hypersomnia Awareness Week® – Research Changes lives
5th annual international Idiopathic Hypersomnia Awareness Week® runs from 4th through to 10th September. This year our focus is on Research.
Idiopathic Hypersomnia is a neurological sleep/wake disorder. It can cause a range of symptoms including excessive nocturnal and daytime sleep despite more than adequate good quality sleep, chronic daytime sleepiness, persistent ‘brain fog’, sleep drunkenness (i.e; severe sleep inertia): extreme and prolonged difficulty awakening from sleep, confusion, disorientation, irritability and poor coordination with an uncontrollable desire to go back to sleep. It can also be accompanied by automatic behavior (performing tasks without consciously knowing it and not remembering you have done them eg: turning off alarm clocks or answering your phone).
Why is research and knowledge so important?
- Very little is known about the cause of Idiopathic Hypersomnia so there is no cure.
- There is no definitive test for Idiopathic Hypersomnia, current testing methods are unreliable.
- There are no approved medications for Idiopathic Hypersomnia and the medications that are used are not ideal particularly as they don’t target the cause.
- Current medications only partly assist managing symptoms and they are often not effective long term.
- 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.
- Many people with Idiopathic Hypersomnia can go for years undiagnosed.
- Due to a lack of knowledge and understanding of Idiopathic Hypersomnia some people are misdiagnosed and are given inappropriate medications.
There are many misperceptions about Idiopathic Hypersomnia. This combined with inappropriate testing methods has resulted in idiopathic hypersomnia being one of the most misdiagnosed of all neurological sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for these 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 that will lead to better more appropriate diagnostic tools.
Idiopathic Hypersomnia Awareness Week® 4-10 September 2017 – Research Changes Lives
We will be using the hashtags #IHAW2017 and #ResearchChangesLives
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