During the recent IH Education Day in Brisbane, 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 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 is clear - what is needed for IH is universal. IH needs awareness.
The project:
I am asking people with IH (or their carers on their behalf, ie: parents) to write to their local parliamentary members. The letter needs to articulate to your government representative what living with IH is like. Detail how it impacts your life, your future, and the lives of those around you. The letters need to tell policy makers not just that life is tough but how life is so tough.
For example, instead of saying, "I can't wake up in the morning so I lost my job”, say something like, "IH makes waking up in the morning extremely difficult. I sleep so deeply that I sleep through multiple alarm clocks; I need a human to wake me. It can then take up to an hour for my body and brain to engage. My brain feels foggy and I can't think properly. I am clumsy and may drop things or bounce off walls. This is called sleep drunkenness. This makes it unsafe for me to drive and can even make using public transport difficult. Because of this, I lost my job. My employer had never heard of IH and refused to try to understand it. I literally don't have the energy nor wakefulness to fight the decision so now I am unemployed and risk losing my home.” I'm sure you get the idea. Politicians need to hear how IH impacts you and society.
You won’t need to explain what IH is and how there are no medications available or support etc. I have written a standard piece that explains all that (with references) including how the issues around access to treatments in Australia and the general lack of understanding affect people with IH. This extra piece will be added to all the letters. I have written this so that you don't have to and so that you can concentrate on your own story. The letters will be sent to each individual’s local members, with a copy to the Health Minister. Every letter will be recorded so that we know which politicians have been sent letters, and how many they have received from people with IH. This record will help us in various ways.
During the Idiopathic Hypersomnia Awareness Week (IHAW – 5-12 Sept 2022) I will be sharing parts of the letters like I normally would share stories. I will be tagging the Politician (if they have social media) that was sent the letter, and the Health Minister. I will do this with both HA and the IHAW's social media. You can remain anonymous in these social media posts if you would prefer.
I know it may be hard to write about your struggles. Many of us just soldier on and may not even realise how many hurdles are in our way as we drag ourselves over them. I often see this when people send me their stories. I have become quite good at helping people describe their situation a little better, so don't feel discouraged or overwhelmed, I can help you. I do this every year for the IHAW so even if you don't want to take part in this project (ie: send your story to your local member) I would still love to share your story during the IHAW.
Want to take part in this project? What now?
Send me an email at info@hypersomnolenceaustralia.org.au and let me know that you want to take part. Tell me what suburb and postcode you live in (this will help me to find your local member). I will then reply with the extra piece that I have written so that you have an idea of what will be added to your story. I will also tell you who your local member is and their contact details. If you need help with your story or have any questions, please feel free to ask.
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.
I will need your story no later than 12th August if you would like to take part in this project, please consider getting started as soon as possible. So many people with IH tell me that they want to do something to help create awareness and instigate change. Your time is now. This is your opportunity to have your voice heard.
