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Idiopathic Hypersomnia - Advocacy and Awareness

During the Idiopathic Hypersomnia & Narcolepsy Education Day in April this year, we discussed what was needed for Idiopathic Hypersomnia (IH), not just in Australia, but around the world. Prof Ron Grunstein and Dr David Cunnington's presentations both centred around what the current IH challenges are and how we can address them. Prof Yves Dauvilliers (a leading IH and Narcolepsy researcher from Montpellier, France) was also one of our speakers. His 5 year goal is to get IH to the place Narcolepsy is now, ie: undertaking more meaningful research which leads to a better understanding of IH, its cause/s, and more appropriate treatments.

The message was clear - what is needed for IH is universal. IH needs awareness. Hypersomnonlence Australia set about creating an awareness project. With a Federal election in May we knew it was wise to wait until that was decided so that we knew who would be representing us for at least the next 3 years. We asked people with IH and their carers eg: parents, to write to their local parliamentary members. A copy of their letter would also be sent to their State Health Minister and also the Federal Health Minister. By creating this awareness and sharing it with the Politicians entrusted with representing us, their constituents, we hope to influence policy making in a meaningful way. It makes no sense to do nothing but wish things were different; we need to take action to make the difference. The letters needed to articulate very clearly what living with IH is like. Including the impact it has on quality of life, and the lives of those around someone living with IH. The letters needed to tell policymakers not just that life is tough but how life is so tough. Politicians need to hear how IH impacts the sufferer and society. I know how hard it is to write about your struggles when you have IH. Indeed, I know how hard it can be for someone with IH to write anything (it’s taken me days just to write this). But it can be particularly difficult to write about an IH journey because it is typically a very emotional one. It is very easy to think about writing and become overwhelmed and discouraged (‘Why bother? No one cares’). It is also very difficult because many of us have spent years soldiering on so may not even realise how many hurdles are in our way as we drag ourselves over them. We live an existence in survival mode and stopping to think about it can put us in a very dark place. I often see this when people send me their stories. I have become quite good at helping people describe their situation a little better while supporting them through what can be a very upsetting process. It is also upsetting and confronting for me to see people who are struggling so much, but I can help them because I am living with IH too. Also, I have been helping people from all over the world share their IH stories for a long time. I have travelled with some people on their IH journey over years and have helped them reach acceptance. The struggle never leaves you but it is nice to know that I have helped some people be at peace with their diagnosis because they have learned a better way to live with it. In my presentation at the IH & Narcolepsy Education Day I spoke about acceptance and how important it was to me with regard to managing IH. I am now in a much better place than I have ever been and acceptance was key. You can access my presentation here or on YouTube. This year the Worldwide Idiopathic Hypersomnia Awareness Week (IHAW) celebrates its 10th annual event (5-11 Sept 2022). I created the IHAW in 2013 at a time when there was virtually no awareness of IH in the mainstream, or even in areas of the sleep medicine community. Over time I have seen not only awareness grow but I have also had the privilege of getting to know some pretty remarkable people living with IH. Many of these people are highly intelligent people who have pushed themselves through extraordinary challenges to achieve great things but due to IH they can no longer continue in their chosen profession.

Tiffany was a medical scientist. Caitlin was a registered nurse. Shelley was a human rights lawyer. Kelly was a Medical Doctor. Jeremy was in the Australian Regular Army and trained to be a pilot. The Australian Defence Force only offers pilot positions to the very best and Jeremy was one of them until IH