Updated: Jul 28
I’ve had a busy year with sleep health advocacy this year. HA’s new website was launched in January and soon after I published Australia’s first ever information brochure on Idiopathic Hypersomnia and sent copies out to sleep specialists across the country. We had another successful Idiopathic Hypersomnia Awareness Week (IHAW). I attended the Australasian Sleep Association Sleep DownUnder conference as an exhibitor with Sleep Disorders Australia and I was a presenter at one of their short courses “Assessment and Treatment of Excessive Daytime Sleepiness: Risk, Rewards and Patient Perspectives on Stimulant Use".
I tackled the SA Government over their decision not to move the old sleep lab to the new RAH. I managed to get a TV news interview with one of our IHAW ambassadors, Jessica Ludwig who is a SA resident. This was another Australian first, IH on prime time TV! I am now in the process of challenging the Federal Government over their MBS review decisions regarding sleep studies. I have been invited to attend and give a brief address at the Governments Sleep Health Awareness Inquiry at a roundtable public hearing in Canberra on 11th February (it was scheduled for November 2018 but was cancelled at the last minute). Edit: you can read the report of the hearing here
IH research is on the increase with a number of papers published this year. Including a case study on the lack of significant transfer of modafinil from mum to baby via breastmilk. A study published in April in the Sleep Research Society journal, Sleep showed how electroencephalography (EEG) segments in sleep studies differ among patients with Narcolepsy with and without cataplexy, IH and controls. “...Patients with idiopathic hypersomnia appeared to have normal circadian timing of REM but altered homeostatic regulation that suggests increased deep sleep and/or reduced homeostatic efficiency...” This is significant because it supports other research that also suggests people with IH have increased deep sleep. For those of you that don't know the wavy design in both HA's and the Idiopathic Hypersomnia Awareness Week's logo represents a delta wave. Delta waves are usually associated with the deep sleep experienced during stage 3 of NREM sleep, also known as slow-wave sleep (SWS). We are however still without a biomarker and the treatments that are available are not ideal for many people but the good news is research interest in IH has definitely come along way in the last 5 years so I would like to thank all of the researchers all over the world that are dedicated to finding answer/s for people with hypersomnia. I know I speak for everyone living with hypersomnia when I say we very much appreciate what you do for us!
Despite the invitation the government is not paying my travel expenses to Canberra. I will be travelling to Melbourne in January to meet people with IH and also associated health care professionals about improving access to affordable sleep studies and treatments. I will be travelling to Sydney in October for the Australasian Sleep Association conference where I will continue to advocate for the needs of people with all sleep disorders, particularly disorders of Hypersomnolence, Narcolepsy and Circadian Rhythm Disorders. I can not have a paid job because I dedicate all my wakefulness to the work I do with HA, Sleep Disorders Australia and the IHAW. My husband primarily funds the things I do and everything else relating to HA and the IHAW so I would also like to thank the few people that donated to HA and to the IHAW this year. Words can not express my gratitude to you for your contribution. It really does make a difference! If you would like to help keep the IHAW going and help me to continue to advocate and raise awareness please consider donating, no amount is too small, click here.
I hope everyone is enjoying some wakefulness with their families and friends over the holidays. It is a tough time of year for anyone with chronic illness so if you are feeling isolated or are finding all the expectations difficult I recommend checking in with a support group. For Australians there is Idiopathic Hypersomnia Australia https://www.facebook.com/groups/idiopathichypersomniaaustralia/
If you are in the UK there is Idiopathic Hypersomnia UK https://www.facebook.com/groups/144018857571/
And for everyone anywhere in the world there is Idiopathic Hypersomnolence Worldwide https://www.facebook.com/groups/340350082793054/
Michelle Chadwick Founder/Director HA Founder/Project Manager IHAW