Idiopathic Hypersomnia Awareness Week®
5-11 September 2016 - Improving Quality of Life
The theme of the 2016 IHAW was “Improving quality of life”, this followed on from Hypersomnolence Australia’s campaign “Help us change the prognosis”.
It was a wonderfully successful Awareness Week. When I started the event in September 2013 I hoped that it would become a significant awareness initiative for Idiopathic Hypersomnia but I never imagined that in just 3 years the event would be as successful as it was this year.
This year saw the IHAW receive its own social media. This has given us the opportunity to really measure its success. By the end of the week, the IHAW Facebook page had reached over 40,000 people since it was launched in June 2016 (just 12 weeks!), almost 30,000 of them were reached during the seven days of our awareness week! The Hypersomnolence Australia website had almost 20,000 unique visitors (individual people, not the same person visiting it over and over) in that same period, since June when I started promoting the Awareness Week. That is nothing short of miraculous considering our old website was actually quite primitive. These results are huge for a sleep/wake disorder that most people, including doctors, have never heard of.
Thank you to everyone that liked, commented on and shared posts and pics. Thank you to those of you that shared your stories. It can be a daunting task writing about your experiences but these stories need to be told, I’m glad I was able to help you put your words together. Your stories have done exactly what I knew they would, they have inspired people and they have given them hope. (click here to read these stories). Thank you also to each of you that shared your experiences in videos. Putting a face to your experience is brave and selfless. I appreciate the effort made by Diana Kimmel and Jennifer Beard of Hypersomnia Alliance to do this project for people in the US at relatively short notice.
Each of the ambassadors raised awareness of the event in their own unique way just as I had hoped. Facebook and social media, in general, is definitely an important medium for reaching the public so thank you to those of you who diligently liked, commented and shared posts. This is without a doubt one of the easiest but most effective ways of getting Facebook posts seen by large numbers of people so I appreciate your help doing that. I am however also mindful of the big wide world beyond social media so I also appreciate the effort in raising awareness of our event outside of that.
I am also extremely grateful to Talinka Hill from Xpress Design for volunteering her time and talent to designing the artwork for the IHAW2016 as well as the IHAW official logo.
One of the other benefits of the IHAW having its own social media is that it helps the success of the awareness week to continue to grow. It provides a central place on Facebook where all of the information can be found so it ensures the stories, articles, and images will keep being shared online. It also allows me to keep everyone updated from now until our next awareness week. So if you are on Facebook make sure you like the Idiopathic Hypersomnia Awareness Week® page. We are also on Twitter and Instagram.
Preparations usually begin around March. This is when we start looking for ideas including on what our next theme should be. So if you have any ideas you want to share contact us!
Idiopathic Hypersomnia Awareness Week® 2016 Ambassadors
Michelle Chadwick – Brisbane, Australia
Tiffany Towsend - Perth, Western Australia
Caitlin Spratling - Melbourne, Australia
Clare Phipps - London, UK
Nicole Franz - Washington, US
Melissa Pittman - Mississippi, US
Diana Kimmel Atlanta, US
We shared stories from people living with Idiopathic Hypersomnia to help others understand what life with Idiopathic Hypersomnia is like and to help other suffers see how people manage their condition. Go to our Patient Perspectives page to read these stories.
Why no sleepy images in the IHAW2016 Artwork?
We were very fortunate to have Talinka Hill a talented Brisbane graphic artist design the artwork for this year’s IHAW.
The focus of the 2016 IHAW was 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 know that an average person sleeps 8 hours a night which means, if they live to the age of 75 they will spend one third, or 25 years of their life asleep. That means that people with Idiopathic Hypersomnia can spend as much as 50 of their 75 years asleep and the remaining 25 years fighting to wake up and struggling to stay awake! This naturally provides its own set of issues completely apart from the symptoms of the disorder. Idiopathic Hypersomnia is a lifelong debilitating disorder, often profoundly affecting every area of life including education, employment, and relationships. As a result of this and the stigma often attached to Idiopathic Hypersomnia it is not uncommon for patients to suffer psychologically including feeling isolated, and at times depressed and socially anxious.
Being diagnosed with Idiopathic Hypersomnia can, however, provide sufferers with some relief. They can finally prove to their critics that they are not lazy, that they do not choose to sleep excessively and that they do not do anything to contribute to their sleepiness. However the prognosis clearly is not good and finding this out can be very confronting, and very lonely.
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.
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. Therefore, the people in the IHAW2016 artwork represent the supportive community that is necessary for improving quality of life. Overall the artwork depicts hope and the brighter future we wish for everyone with Idiopathic Hypersomnia.
*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.
You can listen to the IHAW Community Service Announcement here