9. Mar, 2016

3rd Anniversary as a Health Promotion Charity - New Direction Moving Forward

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 everyday 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 will start to reflect the broad range of work that we do.

Hypersomnolence Australia are 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.

Help change the prognosis