Below are links to our past Newsletters. If you would like to subscribe for our future newsletters click on this link.
Our 5th Newsletter celebrates Hypersomnolence Australia as a registered Health Promotion Charity.
Our 4th newsletter was an overview of some of the things we had been up to during the year.
Our 3rd Newsletter was dedicated to the 2016 Idiopathic Hypersomnia Awareness Week
"It has been a very busy time since our last newsletter. While we receive advice from various people there is only two volunteer staff that work to put everything together at Hypersomnolence Australia (HA). We keep all our social media and website up to date so we decided it was time to bring parts of that together in a newsletter...."
Our first Newsletter focused on the upcoming Idiopathic Hypersomnia Awareness Week.
IN THE MEDIA
Airing from Saturday 20th September 2014 on community radio FM107.5 Orange NSW will be a community service announcement on Idiopathic Hypersomnia for Hypersomnolence Australia. We would like to thank Benjamin Riley for writing the script and of course FM107.5 for giving us this wonderful opportunity to continue to raise the profile of Idiopathic Hypersomnia in the general community. Community Service Announcement
Idiopathic Hypersomnia is in the media again!
Michelle Chadwick told her story to that's life writer Nina Young and the result is
in issue 5 Feb 2014 of that's life magazine.
You can see the article in the Personal Stories
IDIOPATHIC HYPERSOMNIA ON THE RADIO
Have you ever thought how wonderful it would be if IH was discussed in the Australian
media. Well now it has! Hypersomnolence Australia had the opportunity to talk to Ola from the Community Connect radio program. We were delighted by her genuine interest and desire to help us raise awareness.
Welcome to our latest guest post of PatientTalk.Org. Michelle Chadwick of Hypersomnolence Australia has graciously written a fascinating blog for us on Hypersomnolence.
Idiopathic Hypersomnia – IH (also referred to as Idiopathic Hypersomnolence) is a rare neurological sleep disorder characterised by excessive sleepiness. Despite sleeping in excess of 10 hours a night people with Idiopathic Hypersomnia still wake up (either in the morning or at the end of nap periods during the day) unrefreshed and usually also suffer sleep inertia or sleep drunkenness (significant difficulty in coming to complete wakefulness accompanied by confusion, disorientation, poor motor coordination, blurred vision, difficulty expressing & understanding verbal communication, slowness, and repeated returns to sleep) that can often last all day (sometimes referred to as “brain fog”). People with Idiopathic Hypersomnia can sleep through several alarm clocks and even physical attempts by friends/family to wake them may fail. Daytime naps are generally very long and are also unrefreshing, as opposed to the short refreshing naps usually associated with narcolepsy.
People with Idiopathic Hypersomnia experience these symptoms continually for years. Idiopathic Hypersomnia is a lifelong disorder with symptoms typically beginning in adolescence or young adulthood. Idiopathic Hypersomnia is often debilitating as the impaired cognitive ability* and continuous feeling of sedation profoundly affects work, education, and quality of life and leaves sufferers at risk of potentially life-threatening domestic, work-related and driving accidents. In addition, some patients exhibit hypersensitivity to sedating medications such as anaesthetics, sleeping pills and alcohol.
Although doctors believe Idiopathic Hypersomnia reaches its peak in young adulthood and remains stable for many sufferers their condition does tend to worsen with age. This is probably due to a combination of the long term ineffectiveness of the medications available and our ability to be able to continue to fight the sleepiness over many years is tested when our responsibilities as adults increases.
The biggest problem for people with Idiopathic Hypersomnia as we age seems to be the loss of our cognitive ability. Where once we may have been professionals, business owners or multitasking working parents we reach a point where all the positive attitude, all the willpower and sheer determination in the world will not make any difference if you simply *cannot* remember how to do the job you have spent most of your adult life doing or you simply *cannot* be trusted to carry out the duties you may have spent years training others to do. The loss of our communication skills can be the hardest blow as it isolates us from the only world we have ever known as we can no longer keep up. Our physical appearance suffers as the struggle to stay awake overtakes simple things like personal grooming, shopping for clothes and even trips to the hairdresser. This of course further isolates us as we become ashamed of whom we have become. Our self esteem plummets and we become at risk of suffering associated depression.
There are no approved treatments in Australia for Idiopathic Hypersomnia. Doctors prescribe medications approved for narcolepsy (Dexamphetamine or Modafinil). Unfortunately for some these medications tend to be less effective than they are for narcolepsy. A prefect analogy regarding these medications is a quote from Dr Jenkins from Emory University. Using stimulants & wake promoting medications “is like flooring the gas pedal in a car with the park brake engaged.” The theory being we need medications that “release the park brake”.
Hypersomnolence Australia (HA) was set up purely out of necessity. While there were organisations around the world that advocate for narcolepsy there was nothing that catered specifically
for Idiopathic Hypersomnia. In Australia in particular awareness of Idiopathic Hypersomnia was almost nonexistent and there was nothing being done to change that. HA is dedicated to being a strong advocacy, raising awareness & educating others about Idiopathic
Hypersomnia and aims to support all patients and their family and friends.
*cognition is a group of mental processes that include attention, memory, producing and understanding language, learning, reasoning, problem solving and decision making.
The term Idiopathic Hypersomnia means:
Idiopathic - ‘of unknown cause’,
Hypersomnolence/Hypersomnia - an extreme or excessive level of sleepiness/sleep.
Article appeared on the Patient Talk website on 24/7/2013