Idiopathic Hypersomnia Awareness Week – Coming Soon
American Sleep Association is proud to partner with Hypersomnolence Australia on IDIOPATHIC HYPERSOMNIA AWARENESS.
Idiopathic Hypersomnia Awareness week – Let’s change the prognosis
5-11 September 2016
Hypersomnolence Australia will launch the fourth annual international Idiopathic Hypersomnia Awareness Week in September. This year our focus is on improving quality of life.
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, extreme difficulty awakening from sleep and an impaired physiological state after awakening known as sleep drunkenness. These symptoms have a devastating impact on the ability to work, socialise, stay healthy and live a normal life.
Confronting facts patients with Idiopathic Hypersomnia face regarding treatment:
• Very little is known about the cause of Idiopathic Hypersomnia so there is no cure.
• There are no approved medications and the medications that are used are not ideal as
they don’t target the cause.
• Current medications only partly assist managing symptoms and they are often not effective long term.
• A number of patient’s symptoms are refractory to current medications.
• 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.
Idiopathic Hypersomnia is often misunderstood and with the current treatment methods being inappropriate and often ineffective the prognosis is clearly not good. We believe the key to improving quality of life is by taking a holistic or “whole” approach to treatment. Patients can very easily 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, psychologically, as well as physically.
The focus of the 2016 Idiopathic Hypersomnia Awareness Week is to raise 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 want to emphasise the importance of the support and understanding of family, friends and health professionals 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.
Idiopathic Hypersomnia Awareness Week will run from
5 – 11 September 2016.
Hypersomnolence Australia IHAW 2016 event page
IHAW Facebook Page
We will be using the hashtag #IHAW2016
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