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Celebrating 6 years raising awareness and advocating for Idiopathic Hypersomnia

Hypersomnolence Australia is celebrating 6 years as a Not for Profit Health Promotion Charity raising awareness and advocating for Idiopathic Hypersomnia.

It all started with me talking to a small group of other people with Idiopathic

Hypersomnia in Australia and the US about the need for an organisation that represents Idiopathic Hypersomnia. There were no organisations anywhere in the world that represented Idiopathic Hypersomnia and that bothered us. There were organisations for other sleep disorders including narcolepsy, but we knew then (and it has since been proven) that Idiopathic Hypersomnia isn't Narcolepsy. We needed Idiopathic Hypersomnia to be represented as the independent sleep disorder that it is, not tacked onto Narcolepsy organisations and initiatives. There was almost no information online about Idiopathic Hypersomnia apart from studies in medical journals (many of which were behind paywalls). When patients were diagnosed with Idiopathic Hypersomnia 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. After meetings with people in Brisbane and Melbourne in 2012 I decided I had to do something so I started the first Not for Profit organisation in the world for Idiopathic Hypersomnia. Hypersomnolence Australia was officially registered as a Not for Profit health Promotion Charity on 4th March 2013. Every year we take a step closer to better recognition and understanding of Idiopathic Hypersomnia. This year, on 11th February we took the biggest step to date. As the Executive Director of Hypersomnolence Australia and Director of Sleep Disorders Australia, I was invited to a public hearing that was held at Parliament House, Canberra to give an opening statement and to take part in the House of Representatives Standing Committee on Health, Aged Care and Sport Inquiry into Sleep Health Awareness in Australia. As someone with Idiopathic Hypersomnia said to me recently "who would have thought when you started HA 6 years ago you would have been invited to talk to politicians in Canberra!?" Indeed who would have thought that there would ever be a government inquiry into sleep health but yes I was just as surprised as the others that attended the hearing to see how interested the Committee was in Narcolepsy and also disorders of hypersomnolence. The first session spoke very much of the problems faced by people with Narcolepsy and disorders of hypersomnolence because sleep medicine in Australia lacks necessary training and education in non respiratory sleep disorders. It also heard of the issues relating to lack of access to medication and also support. There were just 5 people effected by sleep disorders invited to the second session to speak to the Committee and they were four people from the narcolepsy community and me! I can assure you when I started Hypersomnolence Australia and when Melissa Jose started Narcolepsy Australia in 2013 had there been a government inquiry then it would have no doubt been dominated by sleep apnea, insomnia and general sleep health. So while the wheels turn slowly they are turning. I was interviewed by ABC radio about the inquiry on Monday 18th Feb and there has also been TV news coverage. I have been contacted by government representatives that have told me that the Committee are genuinely concerned about the issues we discussed so I am looking forward to the recommendations of the inquiry. You can read my report on the hearing here. Raising awareness is important and we have done a lot of that in 6 years with great results. This year I will be focusing more on the advocacy that I have been working on. I wrote a post in December about some of that work. The Idiopathic Hypersomnia Awareness Week (IHAW) this year will focus on advocacy too.

We have been talking about ideas for this years IHAW (2-8 September). We see lots of campaigns that encourage sufferers of illness to take photos of themselves to put a face to the condition. This is a great idea but we discussed doing this last year and we have discussed it again this year and we are saddened by the fact that many people with Idiopathic Hypersomnia feel the need to remain anonymous. They fear employers finding out and due to the medications, we take some people even fear family and friends finding out that they have Idiopathic Hypersomnia.

The IHAW has done an awful lot since it’s humble beginnings in 2013 to help raise awareness, educate the public and dispel the myths. However, if there are still people that hide their condition we still have work to do.

Please share your ideas for #IHAW2019 with us. What can we do to help people with Idiopathic Hypersomnia feel as confident about discussing their medical condition as someone with any other neurological disorder can? Are you willing to share a photo of yourself to raise awareness of Idiopathic Hypersomnia? Why not join us as an Idiopathic Hypersomnia Awareness Week Ambassador click here for more details. Please consider donating to help us continue to reach our goals including hosting the international Idiopathic Hypersomnia Awareness Week ® Click here. Every little bit goes a long way so no amount it too small.

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