Updated: Aug 21
First published on our original website 5 March 2017
New directions and exciting partnerships….
We have learned a lot about Idiopathic Hypersomnia and about sleep medicine in general since Hypersomnolence Australia was officially launched in March 2013. We have learned that sleep medicine is a fairly young medical specialty in not only Australia but the rest of the world too. When we first started Hypersomnolence Australia we were surprised to learn that sleep training for GP's was almost non-existent. We were even more surprised to learn that there were too few specialty training posts for doctors in Australia that could provide broad exposure to and quality training in, the whole range of sleep disorders, particularly non-respiratory sleep disorders. We have also found this to be the case in other parts of the world too. It has certainly explained why there was a lack of awareness and quality information available about Idiopathic Hypersomnia and why there were no support services available to patients, no research being done (in Australia) and no approved medications (anywhere in the world).
While there are organisations that represent sleep health and others that represent specific sleep disorders there were no organisations anywhere in the world that catered specifically to Idiopathic Hypersomnia. When patients were diagnosed there was nowhere for them to go for information so that they could better understand the condition and the implications it has on quality of life. There was nowhere for them to direct family and friends to either which made explaining it to others very difficult.
At the beginning of 2013, we set out to change that by setting up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. Hypersomnolence Australia was registered as a Health Promotion Charity in March that year. We are still the only Not for Profit health promotion charity dedicated to Idiopathic Hypersomnia in Australia but we are pleased to say that there are now other organisations, the Hypersomnia Foundation and Atlanta Hypersomnia Support in the US on board with us raising awareness and providing support and information for Hypersomnia.
We shared this post (copy below) last year on our 3rd anniversary so the direction is not so much new to us however it might be new to others that are unaware of Hypersomnolence Australia’s goals and purpose.
"This month sees Hypersomnolence Australia reach its 3rd anniversary as a registered not for profit health promotion charity. We have come a long way in 3 years and we have learnt a lot too. With that in mind we would like to share with you the direction Hypersomnolence Australia will be taking moving forward. Hypersomnolence Australia was established to exclusively support Idiopathic Hypersomnia however we have come to realise that not everyone diagnosed with Idiopathic Hypersomnia actually has Idiopathic Hypersomnia. We also know that there are people that may have Idiopathic Hypersomnia but who also have other problems (that they may or may not be aware of) that make managing their Idiopathic Hypersomnia symptoms much more difficult. We know this because we have many people from all over the world contact us that are desperate for help and we have helped a number of them find the “right” diagnosis and the “right” treatment options for their situation. There are many people that struggle every day to stay awake and alert. Not all of them have Idiopathic Hypersomnia however many of them find their way to Hypersomnolence Australia looking for advice and support because there really isn’t a lot out there for people that experience excessive daytime sleepiness and hypersomnia. Therefore we know that the work we do is vital to not just people with Idiopathic Hypersomnia, but also to people with Narcolepsy, Sleep Apnea and other causes of excessive daytime sleepiness and hypersomnia so our website and social media may reflect the broad range of work that we do. Hypersomnolence Australia is concerned at the standard of care that we see patients with excessive daytime sleepiness and hypersomnia receive so while our primary goal is to change the prognosis for people suffering from idiopathic hypersomnia we are also determined to see improvements made with regards to the diagnosis, treatment and care of patients who suffer from all forms of excessive daytime sleepiness and hypersomnia, regardless of the cause. We see too many doctors that think the answer is to prescribe stimulant medication and tell patients to practice better sleep hygiene. We have seen firsthand that this is not the answer. Even if stimulants are the only treatment option they are not a solution in any circumstance (stimulants do not treat the cause of any medical condition). In some cases they can actually do more harm than good and we have seen this happen. We have found that in conjunction with suitable medication (if required) patients that have emotional and practical support from friends, family and the community and who make appropriate lifestyle adjustments while keeping on top of other health concerns have a better chance of living a happy and productive life, but they need help to achieve this. We hate to turn anyone away but the reality is we can’t keep going on the generosity of our few donors. We believe that everyone struggling with excessive daytime sleepiness or hypersomnia deserves the opportunity to live the best life possible and we are committed to making that happen but it is a huge task and we need your help."
We will continue to move in the direction mentioned in this post and look forward to working with Sleep Disorders Australia on joint projects that see both organisations reach common goals.