Delegate: Hypersomnolence Australia
Affiliations: Hypersomnolence Australia
Short Bio: Hypersomnolence Australia’s goal is to support the medical community work towards a better understanding of Idiopathic Hypersomnia, effective treatment options, and identifying biomarkers that will lead to more appropriate diagnostic tools and ultimately a cure for Idiopathic Hypersomnia. We are committed to being a strong advocate, raising awareness and educating others about Idiopathic Hypersomnia. Our goal is to not just change the process to diagnosis but also the level of care and services available to patients post diagnosis.
Hypersomnolence Australia also hosts the international Idiopathic Hypersomnia Awareness Week held annually in the first full week in September. www.hypersomnolenceaustralia.org.au
Activity: Idiopathic Hypersomnia, sometimes referred to as Idiopathic Hypersomnolence, is a neurological sleep/wake disorder characterised by excessive sleep and daytime sleepiness.
Most people can feel tired, fatigued and at times, excessively sleepy, particularly when they do not get enough sleep. However what sets people with Idiopathic Hypersomnia apart from the general public and even people with other sleep disorders is that they experience extreme sleepiness despite getting adequate or typically more than adequate hours of sleep (typically more than 11 hours in a 24 hour period). Their sleep may be deep and uninterrupted but it is not refreshing. Despite extraordinary amounts of good quality sleep people with Idiopathic Hypersomnia are in an almost constant state of sleepiness.
Idiopathic Hypersomnia can cause a range of symptoms including excessive nocturnal and daytime sleep despite more than adequate good quality sleep, chronic daytime sleepiness, extreme and prolonged difficulty waking up from sleep, accompanied by confusion, disorientation, irritability and poor coordination with an uncontrollable desire to go back to sleep. It can also include automatic behavior ie: performing tasks without consciously knowing it and not remembering you have done them eg: turning off alarm clocks or answering your phone, and cognitive dysfunction (commonly referred to as ‘brain fog’) ie: problems with memory, automatic behaviour, concentration and attention.
Unlike in other sleep disorders, the sleep in patients with Idiopathic Hypersomnia is normal; there are no disturbances that can account for their symptoms. There is no cure and the medications that are available only assist with some of the symptoms, they do not treat the cause. Idiopathic Hypersomnia has a devastating impact on the ability to work,socialise, stay healthy and live a normal life.
This World Sleep Day we would like to raise awareness of this often misdiagnosed neurological sleep disorder via an online campaign that aims to reach people who may have Idiopathic Hypersomnia, the general public and also healthcare professionals. We want people to understand the impact Idiopathic Hypersomnia has on a patient’s life and how the consequences of that can make the symptoms more difficult to manage.
There are many misperceptions about Idiopathic Hypersomnia. This combined with inappropriate and unreliable testing methods has resulted in Idiopathic Hypersomnia being one of the most misdiagnosed sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for the 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 so that scientists can develop better more appropriate diagnostic tools and treatments.
Location: Australia
Date of Activity: 15 March 2019
Submitted By: Michelle Chadwick
