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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 forced him not only out of the pilot program but out of the Army altogether. All of these people and many more had career aspirations, life goals, and dreams that have been completely destroyed by the impact IH has on their lives. As I mentioned above helping people share their IH stories can be a very emotional experience for me. I would like to share parts of some of the letters that have been shared with Australian politicians recently. You can find these stories and more on the Living with IH page on our website. Idiopathic Hypersomnia has an impact on nearly every aspect of my life - practically, socially, emotionally, and sometimes psychologically when I am faced with yet another instance of living in a world that is not suited to life with this kind of disability. Because there is no suitable medication I can take that will take away the overwhelming and unpredictable sleepiness I experience, the best way I can manage my sleepiness is to have several daytime sleeps. These daytime sleeps totalling about 3-6 hours in duration are in addition to the 10-12 hours of sleep I get overnight. Read more from Trinity

There is nothing worse than hearing people say things like 'I wish I slept as much as you.' or 'you’re so lucky!' NO, I'm not lucky and I hate it, I feel as though I’m missing out on so much of my life because all I want and need is sleep, and yet sleeping never makes it feel any better. I'm constantly exhausted! Read more from Katarina I am watching the years go by in a blurry fog and I’m gutted at the realisation I’m sleeping my life away. Equally painful is that my debts and responsibilities mean that after sleep, work is the priority in my life, and all else – my amazing wife and family, friendships, and everything else – gets barely a look in and the scraps of whatever attention and consciousness I can muster when not sleeping or working." Read more from Andrew

Even with 16 hours sleep a day I still struggle daily with reduced alertness, shortened attention span, poor judgement, reduced decision-making skills, poor memory, reduced concentration, mentally ‘stalling’ or fixating on one thought, moodiness and bad temper, loss of motivation, making mistakes by forgetting to do something, making mistakes by choosing the wrong option, problems with impulse control leading to risk-taking behaviours. Read more from Tiffany “Every morning I wake with sleep drunkenness. The best way I could describe this is not as a strong desire to stay in bed and sleep a little longer, but that getting up is almost physically painful. I have lost count of the number of morning appointments I have missed because I have either entirely slept through my exceedingly elaborate alarm ritual or simply fallen back asleep literally within seconds of waking up… As if sleep drunkenness were not difficult enough to live with, the desire to sleep is ever-present throughout the day. ‘Tired’ is an entirely inadequate description for a sufferer of IH. ‘Tired’ is to IH as ‘questionable decision making’ is to Vladimir Putin. The feeling of tiredness is perpetual and unresponsive to behavioral interventions such as naps, longer overnight sleep, exercise and diet.Click here to read more from Jeremy

So how is our awareness project going?

At the time of writing 25 people Living with IH have written to their local MP with a copy of that letter going to their State Health Minister and Federal Health Minister. There have been various replies including from Mr Shayne Neumann MP, Federal Member for Ipswich Qld who has invited the letter writer to meet him. The Chief Minister of the Northern Territory, Natasha Fyles has offered to help raise awareness and has advised NT Health Officials of the message in the letter and has encouraged them to distribute it throughout NT Health Services. Even the Prime Minister, Anthony Albanese has received a letter as he has at least one person with IH living in his electorate. The Federal Health Ministers' office has been impressed by our efforts. This led Dr. Leanne Laajoki, Director – Chronic Conditions Policy Section, Cancer, Hearing and Chronic Conditions Division | Primary and Community Care Group, Australian Government Department of Health and Aged Care to reach out to me. I was invited to meet Dr Laajoki and 5 of her key staff members recently. They were genuinely interested to learn more about IH and about our challenges. I knew this was a perfect opportunity for appropriate government representatives to meet people living with IH other than just me so I asked Amanda Vernon and Tiffany Townsend to come along to the meeting. We understand the challenges, eg: the government can’t approve drugs if drug companies don’t sponsor applications to register them and drug companies can’t sponsor applications unless there is strong evidence that will satisfy the application requirements. Research is needed. This takes us back to what Prof. Dauvilliers explained in one of his presentations, in order to produce meaningful research, they need to properly classify disorders of hypersomnolence. This is something Prof. Dauvilliers and others have been working on. My message to Dr Laajoki and her team was, that we know about the limitations and challenges, we want to know what the government on Federal, State, and Local levels can do to help us, not what it can’t do. Meaning if they know that the situation is complex and not easily overcome, they need to understand the impact it has on the lives of people living with IH and they need to provide assistance so that those people can live the best lives possible under those difficult circumstances. If you wrote a letter and have not heard back from either your local member, State Health Minister, or the Federal Health Minister, please don’t be despondent. Your voice has been heard. The project was designed to help raise awareness in as many areas of relevant government as we can and with your help, we certainly achieved that on a scale we should all be proud of. And I will keep working to achieve that goal, it doesn’t stop here. This was just another step in the process. I know the process is slow but what keeps driving me is that I know we are making a difference. IH awareness and advocacy have come such a long way from when I started 10 years ago which really was ground zero. If you would like to help us continue with our advocacy and awareness please consider donating. No amount is too small. And as Hypersomnolence Australia is a registered not for profit charity, all donations over $2 are tax deductible. You can donate via our PayPal Giving Fund or via direct deposit, our bank details are: BSB 014286 Account No. 210329584 Michelle Chadwick


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