Idiopathic Hypersomnia Awareness Week 5-11 Sept 2016
Idiopathic Hypersomnia Awareness Week is coming soon!
5-11 September 2016
We have seen the annual international Idiopathic Hypersomnia Awareness Week (IHAW) steadily grow since it began in 2013. Its success shows us that the IHAW is a very important and much needed event for the Idiopathic Hypersomnia community.
This year the IHAW received its first official logo.
The wavy line means more than you might think. Read about it here.
We have been very fortunate to have Talinka Hill a talented Brisbane graphic artist design our logo and the artwork for this year’s IHAW.
Why no sleepy images? Click here to
find out why.
IHAW also now has its own social media - Facebook and Twitter @IHAWeek. We have also been pleased at the interest from organisations with regards to partnering with us. So far the Australasian Sleep Association, the Sleep Health Foundation, the American Sleep Association and the European Narcolepsy Platform have signed up to partner with us this year! This year will also be the first year that we see IHAW Ambassadors promoting Idiopathic Hypersomnia during the IHAW. We believe the role of an Idiopathic Hypersomnia Awareness Week Ambassador is vital to our ongoing success. IHAW is an international event so we are looking for representatives from all over the global eg: US, Canada, UK, Europe and Australasia. The Ambassador role is individual to each person however the aim is the same – promote Idiopathic Hypersomnia Awareness Week within the Idiopathic Hypersomnia patient community and/or the general public. Click here for more information. If you are interested in becoming an IHAW Ambassador you will need to fill in our online Ambassador form. If you have any questions you can contact us at firstname.lastname@example.org
It is the mission of Idiopathic Hypersomnia Awareness Week to raise awareness and to help improve
the level of education of Idiopathic Hypersomnia among the general public, Hypersomnia patients and medical professionals. The theme this year The theme this year is “Improving quality of life”, this follows on from Hypersomnolence Australia’s
campaign “Help us change the prognosis”.
Idiopathic Hypersomnia is often misunderstood and with the current treatment methods being inappropriate and often ineffective the prognosis is clearly not good. We believe the key to improving quality of life is by taking a holistic or “whole” approach to treatment. Patients can very easily neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally, psychologically, as well as physically.
The goal of the 2016 Idiopathic Hypersomnia Awareness Week is to raise awareness of the need to acknowledge the impact Idiopathic Hypersomnia has on a patient’s life and how the consequences of that can make the symptoms more difficult to manage. We want to emphasise the importance of the support and understanding of family, friends and health professionals in the overall wellbeing of those with Idiopathic Hypersomnia and we want people to understand that patients need help and practical support to manage their day to day lives.
What is a holistic approach?
It means taking into consideration all the parts that make up a person’s life eg: physical, emotional, mental and spiritual. It’s the concept that the human being is multi-dimensional so for you to perform at your best all areas of your life need to be in good shape. It is very easy for someone with Idiopathic Hypersomnia to neglect areas of their life, including interpersonal relationships and also other health issues because the symptoms of Idiopathic Hypersomnia are so consuming. When this happens it sets off a domino effect that often results in patients struggling to cope emotionally and psychologically, as well as physically.
We will be sharing stories by people who have benefited by making positive changes to their life to inspire others, as well as advice on how to make lifestyle adjustments
and other lifestyle tips to help make the most of living with Idiopathic Hypersomnia.
If you would like to share your story* or tips on how you manage your symptoms we would love to hear from you. You can email us at email@example.com *you can remain anonymous if you wish
Idiopathic Hypersomnia Awareness Week’s social
media will be the central hub for every Idiopathic Hypersomnia Awareness Week event moving forward so make sure to “follow” on Twitter and “like” the Facebook page - make sure you set your notifications to “on” so that you
don’t miss anything. Click here to find out how you do it.
What can you do to help raise
1. Like the Idiopathic Hypersomnia Awareness Week Facebook page. Like and share our posts.
2. Follow Idiopathic Hypersomnia Awareness Week on Twitter. Like and retweet us @IHAWeek
3. Use the hashtag #IHAW2016
4. Share the Idiopathic Hypersomnia Awareness Week posters
5. Change your profile picture and cover photo. We have a Twibbon and there will be others to choose from. We will be posting them to the IHAW Facebook page and our website soon.
6. Share your Patient Perspective.
We are interested in all forms of expression, from written to visually creative work so if you are into photography, design, drawing, painting etc and have something that you have done that reflects your experience with Idiopathic Hypersomnia we would love to share it. Send us an email at firstname.lastname@example.org
7. Share the
Idiopathic Hypersomnia Fact Sheet electronically or download and print out a copy for your health professionals.
8. Make a tax deductible donation. Hypersomnolence Australia, the hosts of Idiopathic Hypersomnia Awareness Week receives no funding and charges no membership. The continuity of the Awareness Week relies on the support of our donors.
9. Share your ideas with us. If you have an idea for raising awareness, fundraising or have a talent you think could help? Send us an email email@example.com