Updated: Sep 9, 2019
The theme of the 2019 Idiopathic Hypersomnia Awareness Week is Living with Idiopathic Hypersomnia – is only part of my story…
Idiopathic hypersomnia (IH) can be so consuming that we can sometimes forget that we are much more than IH. We want to remind people that IH doesn’t define them. We want to celebrate what people with Idiopathic Hypersomnia can do!
We also want to encourage and give hope to those who think they will never be able to hold a job successfully or to have a family or achieve anything meaningful. We want them to know that others have and they can too.
Working, raising children, volunteering, having a social life and doing their best to manage a household and everything else in their life while battling a debilitating neurological sleep wake disorder that too few people understand isn’t easy but many people with IH do. For many of them, it took time to learn how to adapt to and accept their limitations and to embrace what they can do but once they overcame those hurdles they found managing their condition became easier – or certainly less of a struggle.
We want the public to know that there are people with IH in their communities. We are scientists, teachers, business people, students, police officers, mums and dads, and even politicians. We are all working to the best of our ability to achieve our goals and ambitions against at times, insurmountable odds.
You can help us do this!
1. Send in photos of yourself doing something you love or that shows another (not IH) side to you with either a story or just a paragraph that talks about the photo and what you do etc.
2. Send in videos of yourself either doing something you love or that shows another non IH side of you and talk about who you are outside of IH. If you want to talk about how you manage your symptoms so that you can achieve things that’s great too, it will be immensely helpful to others!
3. Not confident about sharing photos or videos? share your story about who you are and what you do despite IH. Tell us how you manage to achieve what you do. It may sound simple or mundane to you but it has the potential to inspire others!
We will be presenting the content we receive on our website and also on our social media during the IHAW.
To get you all thinking, here is an example. Jill is a school teacher who loves to do yoga. She could send in photos of herself in her classroom and/or doing yoga with either a short story or just a paragraph that tells us herself.
You can send your images, videos, words and/or stories to firstname.lastname@example.org Please do this before August 20th so that we have time to upload them and present them in time for the IHAW which is 2-8 September 2019.
If you have any ideas on how you can help us achieve this year's theme please let us know!