Hypersomnolence Australia is on a mission to improve the lives of people with Idiopathic Hypersomnia. But we need champions of change to join us. There are various ways you can support us.

DONATE Hypersomnolence Australia's (HA) commitment to provide information, support and advocacy for Idiopathic Hypersomnia and associated disorders of hypersomnolence throughout Australia is strong but we can not do this alone. If HA has helped you, your family or friends, or you are a sleep health professional and you believe as we do, that HA is a necessary service for people with Idiopathic Hypersomnia and associated disorders of hypersomnolence, providing a donation will help us continue into the future.No amount is too small, every dollar is greatly appreciated as it helps to ensure we can continue to provide quality information and support to patients, carers and the health care community.All donations over $2 are tax deductible.

Why is your gift so important?

Hypersomnolence Australia do not charge membership and we do not receive any funding. HA is completely funded by the community. Your donation will help us continue to advocate for the needs of people with Idiopathic Hypersomnia and associated disorders of hypersomnolence and to provide support and information through our support services and ongoing education and awareness programs.

FACEBOOK FUNDRAISER Facebook fundraisers are a great way to help raise funds. All proceeds raised will go directly to Hypersomnolence Australia through the PayPal Giving Fund. Click here to set up your Facebook Fundraiser. If you have any trouble setting up your fundraiser, please feel free to contact us for assistance.HOLD A FUNDRAISER

Get some friends together and host an event. Whether you host a sausage sizzle, cake sale, trivia night, organise a walkathon or would like to donate the proceeds of your next garage your fundraising will make a big difference. Contact us and let us know about your event and we will do what we can to help promote it.

BECOME A CORPORATE SUPPORTER

While Hypersomnolence Australia is a Charity, our fund-raising philosophy is one of mutual benefit, not a hand out. If you would like to know more about how your business can benefit by becoming a corporate supporter, please contact us for more information.

LEAVE A GIFT IN YOUR WILL

People all over Australia benefit from the work we do. Much of this would not be possible without the support of our donors. After making sure family and friends are taken care of, there is comfort knowing that your legacy lives on. To download a document outlining the wording of your gift, please

SPREAD THE WORD

Help us get the word out! Share our web pages and social media with all of your contacts and ask them to share them too! for our Idiopathic Hypersomnia brochure that you can download and share.

The Trustee for Hypersomnolence Australia is endorsed as a Deductible Gift Recipient (DGR) from 01 Jul 2013. It is covered by Item 1 of the table in section 30-15 of the Income Tax Assessment Act 1997 ABN: 19662120036

The theme of the 2019 Idiopathic Hypersomnia Awareness Week isLiving 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 ihaweek@gmail.comPlease 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!

#livingwithidiopathichypersomnia

Joint Media Release for Sleep Disorders Australia and Hypersomnolence Australia 27 May 2019

The Australian Parliamentary inquiry final report into Australia’s sleep health ‘Bedtime Reading’ has been well received by both Sleep Disorders Australia (SDA) and Hypersomnolence Australia (HA). SDA-HA now urge the Government to implement the recommendations of the committee.

This world leading Inquiry by the House of Representatives Standing Committee on Health, Aged Care and Sport is the first real investigation by a government committee at Sleep Health Awareness and the way sleep issues impact on our lives, the affect they have on society, and how the Australian Health system is structured to deal with these issues.

The Chairman of Sleep Disorders Australia, Australia’s major patient support organisation, Joseph Soda, has said he is pleased with the report and the recommendations however the recommendations now need to be implemented.

“These recommendations if acted on will have a positive impact on a large number of people with sleep disorders.

The current cost of diagnosis, medical equipment and accessories required to treat obstructive sleep apnea (OSA) has a major impact on patients particularly those who hold a pension and or a health concession card.

The recommendation to have rebates for these costs through Medicare is strongly supported by SDA, and is essential to ensure that the majority of patients remain compliant in continuing treatment. The benefit to society is that treated sleep apnea actually saves money and it also leads to substantial improvements in wellbeing”

Director of Sleep Disorders Australia and Founder and Director of Hypersomnolence Australia, Michelle Chadwick, said the inquiry and the subsequent report and recommendations are important to all people affected by sleep disorders, particularly narcolepsy and idiopathic hypersomnia.

Michelle agrees with Committee Chair, Trent Zimmerman MP who said in the final report ‘While not as prevalent as OSA, narcolepsy and associated conditions such as idiopathic hypersomnia can have a debilitating impact on a person’s quality of life. There is a need to improve the awareness of these conditions both within the community and among medical practitioners.”

“I agree with the Chair Mr Zimmerman. We need to improve awareness and the education of the sleep specialists that are responsible for diagnosing and treating these conditions. People are suffering because many of our doctors do not have the knowledge or experience to properly care for us. The recommendations of the inquiry are good, what we need now is for them to be actioned.” Michelle said.

“SDA-HA supports the recommendation that the Australian Government fund research focused on the prevalence, causes, and mechanisms of rare or not well understood sleep disorders, including narcolepsy and idiopathic hypersomnia. Australian research will lead to better education of Australian doctors which is something that the report identified is sorely lacking."

The full inquiry report can be viewed here.

Media contact: For more information and interview requests on the inquiry report contact: Michelle Chadwick 0405 917 736 or michelle.chadwick@sleepoz.org.au

About Sleep Disorders Australia Sleep Disorders Australia (SDA) is Australia’s only Not for Profit organisation that represents all sleep disorders. Founded in 1996 from a group of organisations that supported sleep apnea, SDA now provides information and offers support and assistance to people and their families who are affected by all sleep disorders throughout Australia. SDA also advocates for the needs of people with sleep disorders and raises awareness of sleep disorders and the significance they can have on the lives of those affected by them. https://www.sleepoz.org.au

Brisbane

Saturday, 18 May 2019 at 11:30am

Lady Marmalade Cafe and Bar

269 Logan Rd

MelbourneSaturday, 25 May 2019 at 12:00pm

Abbey Road Cafe

129-131 Acland Street St Kilda

There will be meet up's in other states if the interest is there. If we don't have the numbers we may consider joint meet ups with Sleep Disorders Australia. We will keep you posted! Michelle

The final report of the parliamentary inquiry into Australia’s ‘Sleep Health’ has been “hailed as a defining moment for patients, clinicians and health experts”, according to the Australasian Sleep Association and the Sleep Health Foundation. I took part in the inquiry and I’m pleased to say I agree with this summation.

Thefindings of the National Inquiry into Australia’s Sleep Health in Australia, conducted by the House of Representatives Standing Committee on Health, Aged Care and Sport, are that sleep should be placed as the third pillar of health, alongside fitness and nutritrion. Excerpts from the Chairman’s introduction below;

“Sleep is a fundamental human need and, along with nutrition and physical exercise, it is one of the three pillars of good health.

We have known the importance of sleep for decades yet for many reasons, sleep health has not received the attention it deserves within our community and in the health programs run by state and federal governments. In part this is because there are still many who think that it’s a sign of ‘toughness’ and a badge of honour to be able to get by on less sleep. The reality is that such an approach does harm — in some cases with very serious consequences.

In reality very few people are able to operate optimally on minimal sleep. In addition to the health impacts, fatigue results in decreased productivity and is the cause of more road accidents than alcohol and drug use combined.

My hope is that this report will help bring attention to the central function of sleep to overall health and wellbeing and increase the focus placed on sleep among policy makers and in the broader community…”

After seven long years of Hypersomnolence Australia raising awareness and advocating for Idiopathic Hypersomnia we are glad to see that it is finally moving out of the shadows. The Australian Parliament have recognised Idiopathic Hypersomnia, the need for better education of medical professionals, access to medications and the impact it has on people’s lives. “While not as prevalent as OSA, narcolepsy and associated conditions such as idiopathic hypersomnolence can have a debilitating impact on a person’s quality of life. There is a need to improve the awareness of these conditions both within the community and among medical practitioners. Further consideration should be given to emerging treatment options that may provide some people experiencing these conditions the opportunity to improve their quality of life…”

The parliamentary report had a specific section on sleep disorders which among other things said: “Idiopathic hypersomnia is characterised by an ‘excessive sleep need’, often ‘greater than 12 hours a day.’(Prof Ron Grunstein). Sleep Disorders Australia and Hypersomnolence Australia (SDA-HA) stated that ‘idiopathic hypersomnia is a neurological disorder diagnosed by identifying key clinical features’ and excluding other possible conditions.”

The report also recognised that doctors were diagnosing unexplained cases of excessive daytime sleepiness and genuine cases of idiopathic hypersomnia as narcolepsy so that people can access treatment; this needs to change not just for patients but so that the real prevalence of both narcolepsy and Idiopathic Hypersomnia can be understood.

The report expressed the Committee’s concern that many people with sleep disorders have experienced stigma as a result of their condition. It was acknowledged that this stems from a lack of understanding in the community. Narcolepsy and Idiopathic Hypersomnia are not well understood by employers or Government Departments. They are not recognised as a disability for the purposes of the Disability Support Pension (DSP) or the National Disability Insurance Scheme (NDIS). It is important that these issues are addressed.

The Committee appreciated the individuals who shared their personal experiences of living with a sleep disorder, or caring for a family member or friend with a sleep disorder. Their accounts highlight the debilitating and wide-ranging effects that sleep disorders can have on quality of life. This is a reminder that telling our stories is a powerful way of being heard.

It was also recognised that illnesses such as Idiopathic Hypersomnia are both poorly understood in the medical community and are difficult to diagnose and that this is due to a lack of training and a dearth of suitable facilities. Also, sleep disorders are not an available career path for doctors except under respiratory medicine. In fact the committee understood the impact of this so much that one of its recommendations is that “the Australian Government investigate options to separate the existing ‘Respiratory and Sleep Medicine’ speciality into independent ‘Respiratory’ and ‘Sleep Medicine’ specialities under the Australian Health Practitioners Regulation Agency framework.”

The recommendations that affect people with Idiopathic Hypersomnia are as follows (abridged):

That the Australian Government fund research focused on the prevalence, causes, and mechanisms of rare or not well understood sleep disorders, including narcolepsy and idiopathic hypersomnia.

That the Department of Health undertake a review of the Medicare Benefits Schedule as it relates to sleep health services in Australia. The review should include, but not be limited to ensuring recent changes to enable general practitioners to directly refer patients to diagnostic sleep studies are effective.

That the Australian Government in consultation with the Royal Australian College of General Practitioners and other key stakeholders assess the current knowledge levels of general practitioners, nurses and psychologists in relation to sleep health, and develop effective training mechanisms to improve the knowledge of primary healthcare practitioners in diagnosing and managing sleep health problems.

That the Australian Government investigate options to separate the existing 'Respiratory and Sleep Medicine’ specialty into independent ‘Respiratory’ and ‘Sleep Medicine’ specialities under the Australian Health Practitioners Regulation Agency framework.

That the Australian Government, in partnership with the states, territories and key stakeholder groups, work to develop and implement a national sleep health awareness campaign. The campaign should:

Provide information on the symptoms, causes, and health impacts of sleep disorders and available medical support for sleep disorders; andCommunicate that improved sleep health can reduce the risk of: developing a serious health condition, impaired judgement and mental functioning, and decreased productivity and performance.

Click here to read the full report and all of the recommendations.

This doesn’t immediately change things around the diagnosis and treatment of Idiopathic Hypersomnia however I am pleased that as a result our submissions to the Inquiry and years of lobbying the Australasian Sleep Association (ASA) they have approached me to work on applications to make medications like Modafinil easier to access on the PBS.

This parliamentary report is a world first. No other national government has ever taken sleep health so seriously. Indeed, it’s safe to say that no national government anywhere in the world has ever discussed the seriousness of Idiopathic Hypersomnia including the need for education for medical professionals, research, and better access to medications and support. This is definitely the start of major change in the way Idiopathic Hypersomnia is perceived and treated in Australia, and Hypersomnolence Australia is proud to be leading the way on this advocacy. Thank you to all of our supporters. With your continued support and encouragement, I am confident that the change we so desperately need will eventually be felt by all those living with Idiopathic Hypersomnia.

Michelle Chadwick

Every year on what would be his birthday,

March 23rd, we honour a man who dedicated his life to medicine and science. Prof Bedrich Roth (1919-1989) was a renowned neurologist responsible for identifying and naming Idiopathic Hypersomnia. His seminal works over many years on narcolepsy and hypersomnia have left an indelible mark on the history of sleep medicine.

The first cases of Idiopathic Hypersomnia were described more than 60 years ago. Roth's first book on narcolepsy and hypersomnia was published in 1957 "Narcolepsy and hypersomnia from the aspect of physiology of sleep" making Roth’s work the first in the area of the modern day era narcolepsy and hypersomnia research.

His book was later re-written with more of his work added and

published in English (with help from his friend and fellow dedicated neurologist and sleep researcher Prof Roger Broughton) in a book called “Narcolepsy and Hypersomnia” . Roth is credited as being a true pioneer in the area of narcolepsy and hypersomnia due to the valuable epidemiological data he compiled on these disorders. Many of his peers regard the book Narcolepsy and Hypersomnia as a true “classic”. Leading narcolepsy researcher Dr Mignot acknowledges that Roth is responsible for the first careful epidemiological studies of narcolepsy and idiopathic hypersomnia and that Roth's work led to the classic diagnostic "narcoleptic tetrad" ie: cataplexy, sleep paralysis, hypnagogic hallucinations, and excessive daytime sleepiness that is still used today. In a discussion with Prof Roger Broughton about Bedrich Roth and the importance of Roth's book, Narcolepsy and Hypersomnia he said “it included not only his remarkable progress having worked on the topic for over a quarter of a century but also citation of the world-wide publications on these interesting diseases. Indeed, it made clear that Professor Roth was the first neurologist to specialise more or less exclusively in the area of narcolepsy and hypersomnia. The earliest contributors elsewhere came mainly from Stanford, California, Montpellier France and Bologna, Italy whose first publications were not until the early to mid-1960 ’s. Moreover, Professor Roth clinical experience in the field was vastly greater than that in these other centres. His case series of persons with narcolepsy and cataplexy and of others with symptomatic hypersomnia each ran into the many hundreds of patients a significant proportion of whom he had followed, often with Professor Nevismalova, for several decades. He also had a significant series of patients with idiopathic hypersomnia and a good number of others with recurrent hypersomnia (Klein-Levin syndrome, bipolar disorder and menstrual hypersomnia) which was also unique at the time of his book”.

You can read more about it here, Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia”

I have spoken to a few neurological sleep clinician/scientists who had the pleasure of working with Bedrich Roth or learning under him and they all remember him fondly as being a doctor that had a deeply caring nature. Prof Karel Sonka "I learned from him many things, most important to listen to the patients". If only there were more doctors like Prof Bedrich Roth!

Mignot, E. Narcolepsy - A Hundred Years of Research. Archives Italiennes de Biologie. 2001; 139: 207-220 Partinen, M. Epidemiological Sleep Research in Europe. European Sleep Research Society 1972 – 2012 40th Anniversary of the ESRS. Regensburg, Bern; 2012

Rye, D. Review of the Idiopathic Hypersomnia Symposium at the World Association of Sleep Medicine Meeting. Hypersomnia Foundation; 2013 http://www.hypersomniafoundation.org/idiopathic-hypersomnia-symposium-at-the-world-association-of-sleep-medicine-meeting/ Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia" Broughton R, Mamelak M. Gamma-hydroxybutyrate in the treatment of narcolepsy. In: Guilleminault C, Dement WC, and Passouant P, eds. Narcolepsy spectrum New York 1976;659-667.

The international Idiopathic Hypersomnia Awareness Week®(IHAW) is an annual initiative hosted by Hypersomnolence Australia. It is held every year in the first full week of September to promote and raise awareness of the sleep/wake disorder Idiopathic Hypersomnia.

We have seen the 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. In 2016 the IHAW official logo was launched as well as its own social media (Facebook, Twitterand Instagram). We also introduced our first group of IHAW Ambassadors.Are you interested in becoming an IHAW Ambassador?

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.

These are just some ideas:

Promote the IHAW social media (encourage others to like and follow us on Facebook, Twitter and Instagram).Change your profile pic and cover photo to one of the IHAW images during Awareness Week or use the IHAW Twibbon and encourage others to do the same.Share IHAW posts and pics on your social media with your family, friends and in your IH patient communities.Send out a group email to all your contacts including the IHAW media release or other information. Volunteer your time and talent to help organise the IHAW (planning for the awareness week starts around March/April).Organise a local event or activity.Work with people in your area on relevant projects. Hold a gold coin donation morning tea event at your place of work to raise awareness and funds to keep IHAW going.

Share your ideas with us! We are open to ideas and suggestions so if you have one we want to hear it! Ambassadors do not have to be patients however if they are they need to be brave. We need people that are brave enough to share the IHAW posts and pics on their social media and with their connections. We would like to give as many people as possible an opportunity to take on the role as Ambassador so your commitment will only be expected for one year.

Raising awareness of Idiopathic Hypersomnia takes a village. Your role as an IHAW Ambassador will encourage others to join in. The louder our voice the better chance we have of being heard. If you think you have what it takes to be an IHAW Ambassador please complete this online form. Or, if you have any questions you can contact us at ihaweek@gmail.com

Day4NAPs is a day for Narcolepsy Awareness Projects (NAPs). In 2019 it will be on 16th March 2019

Why Celebrate on 16 March 2019?

Several years ago, the World Sleep Society (WSW) designated the Friday before the Spring Vernal Equinox as 'World Sleep Day', a day which "aims to lessen the burden of sleep problems on society through better prevention and management of sleep disorders".

In conjunction with the WSW Day4NAPs was established and dedicated the following day to raise specific awareness about narcolepsy, a day for narcolepsy awareness projects, a Day4NAPs! Next year's event will be celebrated on Saturday 15 March 2020.

Who is behind Day4NAPS?

Mark Patterson, MD, PhD, has been involved in all things narcolepsy since a close family member was diagnosed over 15 years ago. The Day4NAPS project was developed from a perceived need to have a combined global effort to raise awareness.

The story behind the Day4NAPS logo

As the Tree of Life connects all of creation, it is Mark Patterson's hope for the Day4NAPS website to connect all of the narcolepsy community in the goal of raising global awareness. As the theme of a campaign a few years ago noted, it is too easy for people with rare chronic conditions to feel alone. That is not the case, especially with the facile use of electronic communication.

So what is narcolepsy?

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles. Narcoleptics are unique in that they enter REM sleep (the period of sleep when dreams are most likely to occur) very quickly after falling asleep, even when sleeping during the day. People with narcolepsy usually feel rested after waking, but then feel very sleepy throughout much of the day. Many individuals with narcolepsy also experience uneven and interrupted sleep that can involve waking up frequently during the night so it might look like narcolepts sleep a lot however research shows they do not sleep anymore over 24 hours than what is considered normal.

The main symptom of narcolepsy, and usually the first to appear is excessive daytime sleepiness (EDS). Some people may also experience uncontrollable brief episodes of falling asleep during the day known as a “sleep attack”. Other symptoms include:

Cataplexy:

Cataplexy is an episode in which strong emotion causes a sudden loss of muscle tone. This sudden loss of muscle tone while a person is awake leads to weakness and a loss of voluntary muscle control. It is often triggered by sudden, strong emotions such as laughter, fear, anger, stress, or excitement. The symptoms of cataplexy may appear weeks or even years after the onset of EDS. Some people may only have one or two attacks in a lifetime, while others may experience many attacks a day. In about 10 percent of cases of narcolepsy, cataplexy is the first symptom to appear and can be misdiagnosed as a seizure disorder. Attacks may be mild and involve only a momentary sense of minor weakness in a limited number of muscles, such as a slight drooping of the eyelids. The most severe attacks result in a total body collapse during which individuals are unable to move, speak, or keep their eyes open. But even during the most severe episodes, people remain fully conscious.

Sleep paralysis:

The temporary inability to move or speak while falling asleep or waking up usually lasts only a few seconds but it can be very frightening, especially in combination with hallucinations. Sleep paralysis resembles cataplexy except it occurs at the beginning or the end of sleep. As with cataplexy, people remain fully conscious. Even when severe, cataplexy and sleep paralysis do not result in permanent dysfunction—after episodes end, people rapidly recover their full capacity to move and speak.

Hallucinations:

People with narcolepsy can have vivid, dream-like hallucinations while falling asleep or as they are waking up. During these episodes, the visions feel real—for example, seeing a person in the bedroom. Hallucinations are usually visual, however any of the other senses can be involved. Hallucinations that happen while falling asleep are called hypnagogic and are called hypnopompic if they happen while waking up.

Other symptoms typically include:

Disrupted nighttime sleep and insomnia:

People with narcolepsy fall asleep quickly however they usually experience difficulties staying asleep at night. Their sleep may be disrupted by insomnia, vivid dreaming, or other sleep disorders such as sleep apnea and periodic leg movements.

Cognitive dysfunction (commonly referred to as 'brain fog'):

Problems with memory, automatic behavior*, concentration and attention.

*Performing tasks without consciously knowing it and not remembering you have done them eg: turning off

alarm clocks or answering your phone.

What causes Narcolepsy?

Scientists believed that Type 1 Narcolepsy (narcolepsy with cataplexy) is caused by a lack of the chemical known as hypocretin (also referred to as orexin) in the brain. Hypocretin is a neurotransmitter involved in the regulation of the sleep/wake cycle as well as other bodily functions such as blood pressure and metabolism. While the cause of the loss of hypocretin is still unknown, current research points to a combination of genetic and environmental factors that influence the immune system.

Other facts:

- Type 1 Narcolepsy affects an estimated 1 in every 2,000-4,000 people.

- It is equally common in men and women. Symptoms typically begin to occur between the ages of 10 and 30, although narcolepsy can occur at any age.

- The average time between the onset of symptoms and diagnosis is seven years. Misdiagnosis is common. In a recent study, 60% of patients were misdiagnosed. Patients are most often misdiagnosed with depression, insomnia and obstructive sleep apnea.

Type 2 Narcolepsy

- The cause of Type 2 Narcolepsy (without cataplexy) is unknown. Some researchers believe that it could encompass a variety of different diseases including the incomplete form of Idiopathic Hypersomnia.

- People with Type 2 Narcolepsy do not experience cataplexy and many of them do not experience sleep paralysis or hallucinations.

- The prevalence of Type 2 Narcolepsy is uncertain because it is not as well studied as Type 1 Narcolepsy. Please share our posters to help raise awareness

Click here to download

References: Day4NAPs

Narcolepsy Network

National Institute of Neurological Disorders and Stroke

World Sleep Day 15th March 2019 With slogans like “Good sleep is a reachable dream”, “When Sleep is Sound, Health and Happiness Abound” and “Restful Sleep, Easy Breathing, Healthy Body” it is clear that the focus of World Sleep Day has always been on the importance of getting a good night’s sleep. And quite rightly so, lack of sleep or poor quality sleep is known to have a significant negative impact on our health. However research also shows that prolonged time spent in bed and excessive sleep is equally damaging to our health. Unfortunately for some people like those with the neurological sleep/wake disorders Idiopathic Hypersomnia and Kleine–Levin syndrome (KLS) sleeping excessively is not a choice. We wrote about this for World Sleep Day 2017, you can read our article here. The purpose of that article "Effects of Excessive Sleep and Prolonged Bedrest" was to raise awareness of the fact that people with Idiopathic Hypersomnia need to sleep more than 10 hours (and usually more) in a 24 hour period. So if doctors and researchers know there are serious repercussions related to prolonged bedrest/excessive immobility and sleeping excessively then what are they doing about it for the group of people that simply *cannot* function on less than 10+ hours sleep? The attitude many people with Idiopathic Hypersomnia get from their doctors is "you have idiopathic hypersomnia, no its no big deal, it's not life threatening, it's not doing you any harm like say a *serious* (some even say a "real") medical condition would" however according to scientific research, that attitude is clearly very wrong and something obviously needs to be done about it. The point of our post was not to say sleeping more than 9 hours is “bad for you”. We know that people with Idiopathic Hypersomnia simply have no choice but to sleep excessively and therefore be immobile for lengthy periods. What we did was point out that there is research that says regularly sleeping 9 hours or more puts you at a higher risk of dying young and this certainly concerns us which is one reason why we believe Idiopathic Hypersomnia should be taken more seriously and not dismissed as something that is insignificant or worse that others would envy. There is absolutely nothing to envy about needing to sleep excessively. You miss out on so much of life. However it's worse than that. There is nothing to envy about needing to sleep excessively and then finding it extremely difficult to wake up and when you do wake up you feel like you have had no sleep at all - and all this, and your sleep quality is good! There is no known reason you should be experiencing this continuous hell. In simple terms, imagine what it would be like to sleep solidly without any disturbance for 12+ hours and then wake up feeling and functioning exactly the same way you do if you had 3-4 hours sleep. Still envious? Idiopathic Hypersomnia is not simply "you're tired all the time and we don't know why". Many (including doctors) incorrectly think Idiopathic Hypersomnia refers to any case of excessive daytime sleepiness (EDS) that cannot be explained by another preexisting medical condition, sleep disorder or by lifestyle or behaviour. This is not correct. It is a neurological sleep/wake disorder characterised by a number of symptoms and clinical features. EDS is just one of them. Idiopathic Hypersomnia was defined by Czech neurologist Bedrich Roth more than 60 years ago starting with his first monograph; "Narcolepsy and hypersomnia from the aspect of physiology of sleep (Narkolepsie a Hypersomnie S. Hlediska Fysiologie Spanku – 1957)" . Roth’s years of extensive research that led to his description of Idiopathic Hypersomnia as a separate disease entity and was accepted and included in the first ICSD (International Classification of Sleep Disorders), the Diagnostic Classification of Sleep and Arousal Disorders in 1979. Since then it has been recognised as a “Rare Disease” and is included in the Genetic and Rare Diseases Information Center (GARD) register and Orphanet. There has been various papers, studies, and book chapters published on Idiopathic Hypersomnia over the years. You can read a review of them here.While we may not know the cause of Idiopathic Hypersomnia research certainly points to the complete form of Idiopathic Hypersomnia being an independent clinical entity. These people need to sleep excessively. Their sleep quality is good - yet they do not feel refreshed no matter how much they sleep. Their symptoms are debilitating. And yet as one researcher has said "they are the most under-served population in the entire sleep community". Please join us in raising awareness of Idiopathic Hypersomnia. Click here for our Idiopathic Hypersomnia brochure.Hypersomnolence Australia are official #WorldSleepDay delegates Please share our awareness images below:

Hypersomnolence Australia is celebrating 6 years as a Not for Profit Health Promotion Charity raising awareness and advocating for Idiopathic Hypersomnia. It all started with me talking to a small group of other people with Idiopathic

Hypersomnia in

We have been talking about ideas for this years IHAW (2-8 September). We see lots of campaigns that encourage sufferers of illness to take photos of themselves to put a face to the condition. This is a great idea but we discussed doing this last year and we have discussed it again this year and we are saddened by the fact that many people with Idiopathic Hypersomnia feel the need to remain anonymous. They fear employers finding out and due to the medications we take some people even fear family and friends finding out that they have Idiopathic Hypersomnia.

The IHAW has done an awful lot since it’s humble beginnings in 2013 to help raise awareness, educate the public and dispel the myths. However if there are still people that hide their condition we still have work to do.

There has been some concern about Dr Hugh Mestitz's imminent retirement. For those that don't know Dr Mestitz has treated people with narcolepsy and idiopathic hypersomnia at Hobart Royal Hospital for many years and the fear is that with his retirement people will need to travel to Melbourne for their ongoing treatment and care. I contacted Dr Mestitz today and I can assure you that he is not going to leave any of his patients in the lurch. He has assured me that no one will need to travel to Melbourne. This is from my correspondence with him "I am reviewing all these (narcolepsy and idiopathic hypersomnia) patients of mine before I retire at the end of May and I am facilitating ongoing prescribing of dexamphetamine, modafinil and armodafinil for them for a period of 36 months. No-one will need to go to Melbourne to get their medications prescribed." He will be referring his patients to Dr Josie Larby in Launceston. Dr Larby has agreed to take on people with narcolepsy and idiopathic hypersomnia. Access to sleep studies for people with narcolepsy and idiopathic hypersomnia and a lack of sleep physicians with an interest and training in non respiratory sleep disorders is an issue in all States and Territories of Australia particularly in rural areas. It is something that the Australasian Sleep Association, RACP, and the Department of Health are aware of so hopefully the discussion at the recent sleep health inquiry will encourage them to do something about it. If you are a patient of Dr Mestitz and you are concerned about your ongoing care and treatment call his office 03 6214 3038 or 6214 3041 and ask for an appointment. Make sure you let the receptionist know why you need to see him.

On 23 November I wrote a post Inquiry into Sleep Health Awareness in Australia. That announced that the House of Representatives Standing Committee on Health, Aged Care and Sport had commenced an Inquiry into Sleep Health Awareness in Australia. The Committee invited submissions from the public to its inquiry. As the Executive Director of Hypersomnolence Australia and Director of Sleep Disorders Australia, I was invited to the public hearing that was held at Parliament House, Canberra on 11th February to give an opening statement and to take part in this very important discussion.

This Federal government inquiry is the first major look at the way sleep issues impact on our lives, the affect they have on society, and how the Australian Health system is structured to deal with these issues. The session at Parliament House Canberra was the 4th in a series. Hearings were also held in Perth, Sydney and Melbourne. The hearings were based largely on the submissions the Government received from the public. There were representatives from health services, various government and charitable bodies and individuals giving personal testimony of the impact sleep disorders have on their lives, and how they managed them.

The session opened with each of the professional attendees giving brief statements. The initial one by Prof Grunstein set the tone by pointing out that sleep medicine in Australia is not a specialty by itself, and that the focus was on respiratory conditions, rather than sleep as a whole. This point was commented on a number of times by others and the committee seemed to take on board the lack of seriousness given to sleep issues in society. In addition, it was pointed out that due to the lack of sleep specialists with a wide range of training and education in all sleep disorders people with non-respiratory sleep disorders are disadvantaged. Also, people living in rural areas get a poorer service, and that being poor meant less access to the services that were available, and that being poor generally meant that you were more susceptible to having a sleep disorder. It was noted that these are particular issues for the Aboriginal population.

Other issues raised included the impact sleep disorders have in the workplace, veterans with PTSD presenting sleep issues and the lack of education of sleep disorders with the public, and within the medical arena.

On a positive note it was acknowledged that there are some good treatments, like CPAP for Sleep Apnea, and CBT for insomnia, but that these need a better national rollout, and that there needs to be better financial support for the provision of CPAP devices to those who could benefit from them.

Sleep deprivation was also mentioned, and the impact this has on Carers too, who often have very disrupted night time sleep, with its knock-on effects.

The points I put across, included the problems with the closure of sleep clinics and the impact this is having, the lack of support for people with sleep disorders including access to medications, and like Prof Grunstein stated, the lack of education within the medical community on sleep disorders and the impact it has on sufferers. The Public Health Association echoed my thoughts on the lack of education and awareness.

Further discussions were had on the closure of sleep centres; the Dept of Health seemed poorly prepared on this issue and lacked an understanding of its impact. Dr Barnes, of the ASA, highlighted the impact this has on Narcolepsy and disorders of hypersomnolence and paediatric patients.

There was much discussion around the access to the right medication and the PBS view that amphetamines should be the first line of medication for Narcolepsy. It was noted with concern that this decision was based purely on cost. Also, the position on Xyrem was highlighted where it isn’t approved by the TGA for general use because of a bureaucratic position on orphan status. It was noted that the TGA knocked back an application to have Xyrem approved as an orphan drug because they didn’t accept that Narcolepsy is an orphan disease. I was asked out the affordability of medications and the impact of this. I explained that the cost of Xyrem had a huge impact on the whole family because it cost $15,000-$20,000 depending on dose. I also said that there is no PBS access to modafinil without a narcolepsy diagnosis which means there is no access for other disorders that experience excessive daytime sleepiness including Sleep Apnea or for shift work disorder sufferers and that there needs to be. I explained to the committee that if you do not have private health insurance the cost of CPAP can be very expensive and that there is no federal funding assistance. Prof Hillman weighed in here with support for a more general use of modafinil as the PBS position is 10 years out of date. Likewise, that CPAP provision should be a federal issue not a state by state responsibility. I have since sent further advice to the Committee explaining the need to have medications approved on the PBS for Idiopathic Hypersomnia independent of Narcolepsy. This advice outlined the problems that occur when these disorders are lumped under one umbrella. One example is that the TGA does not accept Narcolepsy as an orphan disease. If everyone is diagnosed with Narcolepsy simply because they can pass the PBS criteria for prescribing PBS listed medications for narcolepsy it gives the false impression of the number of people who actually have narcolepsy. I wrote, "Whether doctors are labeling the EDS in sleep apnea or difficult to classify cases of EDS as idiopathic hypersomnia which end up on the record as narcolepsy or genuine cases of idiopathic hypersomnia are being ‘coded’ as narcolepsy, it creates many problems. It perpetuates ignorance in relation to the "genuine" diagnosis and it also renders any epidemiological study ‘flawed’. Australian government authorities (including the Therapeutic Goods Administration) rely on statistics from Australia’s PBS and MBS yet these records do not reflect the true prevalence of idiopathic hypersomnia and narcolepsy. Therefore, one could get a false impression of an epidemic of "narcolepsy" when in fact if you were to isolate the true narcoleptics the number would be quite small. It also creates problems when trying to advocate for medications to treat idiopathic hypersomnia and narcolepsy (narcolepsy cannot be considered an orphan disease when there are thousands and thousands of people diagnosed with it). Officially there are no medications on the PBS for idiopathic hypersomnia and people with idiopathic hypersomnia cannot access schedule 8 medications without a narcolepsy diagnosis, this needs to change and there is no reason it shouldn’t."

A lot of the follow-on discussions were about the socio-economic access to care and treatment and the effectiveness of catching and treating these illnesses early. One major point was that the successful treatment of Sleep Apnea did NOT have a cost to Australian society; in fact, it saved society a lot of money overall even with the average levels of compliance, and solutions like this were good for the health system. However, it is suspected that many people with Sleep Apnea are undiagnosed/untreated.

A key point that was glossed over was the Department of Health’s lack of a plan for sleep health, and the lack of data on waiting lists and times. The DoH were quick to move on here, though I think the committee will be less forgiving in its final report.

Discussions turned to the number of sleep professionals and training and their position, or lack of it in the medical community and also ways these issues can be addressed. There was also the question of research, or the total lack of it in the hypersomnolence area, and the lack of data and educated clinicians and researchers to support studies.

The latter time was spent on discussing sleep in society, the fragmented messages, the impact on young people and the lack of a national programme to educate people on the benefits of good sleep. The British have recognised that sleep is more important to young people’s development than anything else and have programmes in place to teach this to young people. Something to consider when developing a sleep health plan.

Finally, when the main session had finished, I and four other ladies with narcolepsy who had been invited to the hearing, gave our own personal accounts on the impact of sleep disorders on our lives. It is a shame that there had not been submissions from people with other sleep disorders, or sleep issues particularly Sleep Apnea, Idiopathic Hypersomnia and Restless Legs Syndrome so that the committee could understand the seriousness of these disorders and the impact they have on people’s lives. Pam and Monica (on behalf of their teenage daughters), and Fiona and Laura did a wonderful job representing people with Narcolepsy and Cataplexy by telling the committee what their life is like. I spoke about my experience with Idiopathic Hypersomnia, the length of time to diagnosis and the impact that had on me over many years and that medication has not given me a “normal” life. I said that I’m tired of hearing the same issues from others time and time again. I pointed out that diagnosed or not, we are still struggling. The system clearly needs to change in many ways. I hope this committee will make recommendations that go towards changing things for all people with sleep disorders so that I will not continue to hear from people in despair over the inadequacies of sleep health services, to give hope to sufferers of sleep disorders and give access to support and medication to all.

You can read the full transcript of the hearing here:

Image is of ASA President Peter Eastwood and Committee Chair Trent Zimmerman MP from Trent Zimmerman's Facebook page

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.

The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Organising care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. As a consequence, people living with a rare disease are often off work or school. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet patients’ best interests.

Rare Disease Day 2019 will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.We do we care? Idiopathic Hypersomnia is a rare disease. It is also one of the most misunderstood and under researched sleep disorders. Many (including doctors) incorrectly think it refers to any case of excessive daytime sleepiness (EDS) that cannot be explained by another preexisting medical condition or sleep disorder or by lifestyle or behavior. This is not correct; Idiopathic Hypersomnia is a rare neurological sleep/wake disorder. EDS is just one symptom of Idiopathic Hypersomnia. Idiopathic Hypersomnia is characterised by a number of symptoms and clinical features first defined by Bedrich Roth more than 40 years ago. Roth’s years of extensive research that led to his description of idiopathic hypersomnia as a separate disease entity was accepted and included in the first ICSD (International Classification of Sleep Disorders), the Diagnostic Classification of Sleep and Arousal Disorders in 1979. Since then it has been included as a “Rare Disease” on the Genetic and Rare Diseases Information Center(GARD) register and Orphanet There are many misperceptions about idiopathic hypersomnia. This combined with inappropriate testing methods has resulted in idiopathic hypersomnia being one of the most misdiagnosed of all neurological sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for these same reasons is immeasurable. Further research is desperately needed in all areas, ie: etiology, epidemiology, the genetic aspects of the disease and to identify biomarkers that will lead to better more appropriate diagnostic tools.“Imagine going to see your doctor only to be told that they don’t know what is happening to your body, that they don’t know what your disease is. Imagine that they can diagnose your disease but tell you that there is no cure or treatment available. Or that the treatment available is not fully effective but just the best possible option. You don’t know how you or your loved one will manage life from one day to the next, nor how the disease will affect your work or school life. This is the reality for many rare disease patients.”

- Rare Disease Day February 28th 2017. This is the reality for people with Idiopathic Hypersomnia.

“With research, possibilities are limitless” - Rare Disease Day

"Rare diseases are rare, but rare disease patients are numerous" - Orphanet Please download and share these images to help raise awareness

I’ve had a busy year with sleep health advocacy this year. HA’s new website was launched in January and soon after I published Australia’s first ever information brochure on Idiopathic Hypersomnia and sent copies out to sleep specialists across the country. We had another successful Idiopathic Hypersomnia Awareness Week (IHAW). I attended the Australasian Sleep Association Sleep DownUnder conference as an exhibitor with Sleep Disorders Australia and I was a presenter at one of their short courses “Assessment and Treatment of Excessive Daytime Sleepiness: Risk, Rewards and Patient Perspectives on Stimulant Use".

I tackled the SA Government over their decision not to move the old sleep lab to the new RAH. I managed to get a TV news interview

IH research is on the increase with a number of papers published this year. Including a case study“...Patients with idiopathic hypersomnia appeared to have normal circadian timing of REM but altered homeostatic regulation that suggests increased deep sleep and/or reduced homeostatic efficiency...”We are however still without a biomarker and the treatments that are available are not ideal for many people but the good news is research interest in IH has definitely come along way in the last 5 years so I would like to thank all of the researchers all over the world that are dedicated to finding answer/s for people with hypersomnia. I know I speak for everyone living with hypersomnia when I say we very much appreciate what you do for us!

Despite the invitation the government is not paying my travel expenses to Canberra. I will be travelling to Melbourne in January to meet people with IH and also associated health care professionals about improving access to affordable sleep studies and treatments. I will be travelling to Sydney in October for the Australasian Sleep Association conference where I will continue to advocate for the needs of people with all sleep disorders, particularly disorders of Hypersomnolence, Narcolepsy and Circadian Rhythm Disorders. I can not have a paid job because reallyclick here.

I hope everyone is enjoying some wakefulness with their families and friends over the holidays. It is a tough time of year for anyone with chronic illness so if you are feeling isolated or are finding all the expectations difficult I recommend checking in with a support group. For Australians there is Idiopathic Hypersomnia Australia https://www.facebook.com/groups/idiopathichypersomniaaustralia/

If you are in the UK there is Idiopathic Hypersomnia UK https://www.facebook.com/groups/144018857571/

And for everyone anywhere in the world there is Idiopathic Hypersomnolence Worldwide https://www.facebook.com/groups/340350082793054/

Michelle Chadwick Founder/Director HA Founder/Project Manager IHAW

The House of Representatives Standing Committee on Health, Aged Care and Sport has commenced an Inquiry into Sleep Health Awareness in Australia. The Committee invited submissions from the public to its inquiry last month. It received more than 100 submissions, this has now led to a roundtable public hearing that will be held at Parliament House, Canberra on 30th November. Hypersomnolence Australia Director and Director of Sleep Disorders Australia, Michelle Chadwick has been invited to attend and give an opening statement at this very important discussion. Some of the issues the inquiry will look at include:

• The potential and known causes, impacts and costs (economic and social) of inadequate sleep and sleep disorders on the community;

• Access to, support and treatment available for individuals experiencing inadequate sleep and sleep disorders, including those who are: children and adolescents, from culturally and linguistically diverse backgrounds, living in rural, regional and remote areas, Aboriginal and Torres Strait Islander;

• Education, training and professional development available to healthcare workers in the diagnosis, treatment and management of individuals experiencing inadequate sleep and sleep disorders;

• Workplace awareness, practices and assistance available to those who may be impacted by inadequate sleep or sleep disorders, with a focus on: rostering practices for shift workers, heavy-work requirements, and the transport industry as compared to international best practice; and

UPDATE 26/11/2018 The program has been announced. There will be four sessions, as follows: - Causes, impacts and costs of inadequate sleep and sleep disorders - Diagnosis, management, treatment and research of inadequate sleep and sleep disorders - Workplace awareness, practices and assistance regarding inadequate sleep and sleep disorders - Individual experiences. The attendees include;

Australasian Sleep AssociationCanberra Sleep ClinicCarers AustraliaCRC for Alertness, Safety and Productivity Department of HealthLet Sleep HappenPharmaceutical Society of AustraliaPublic Health Association of AustraliaRoyal Australasian College of PhysiciansSafe Work AustraliaSleep Disorders Australia - including Hypersomnolence AustraliaSleep Health FoundationWoolcock Institute of Medical Research

This is from a Facebook post I wrote yesterday.

For the urgent attention of people with sleep disorders in Australia.

I’ve just come from a meeting and also a phone conference with industry stakeholders and can advise that due to the government’s wisdom and lack of (any?) effective lobbying by the Australasian Sleep Association and other ‘peak’ bodies Snore Australia, Australia’s largest provider of PSG/MSLT sleep studies has shut down. They officially shut down on 1st November.

Why?

Because new government guidelines say that home sleep studies must make up 90% of MBS claims leaving only 10% for on-site sleep studies. This leaves Snore’s business unviable. (Why would ‘peak’ bodies like the ASA not put up a tremendous fight against this? That is, perhaps, for another post...).

Research has shown that home sleep studies are adequate for appropriately testing for severe to moderate sleep apnea. So for straight forward (uncomplicated) moderate-severe sleep apnea a home study will suffice but what about the many people (only 5% of sleep apnea is considered severe) that a home sleep study isn’t suitable for? This includes everyone that requires a MSLT (and/or a MWT).

What impact will this have on people with sleep disorders?

Home sleep studies are not suitable for all cases of sleep apnea. Two of Australia’s leading sleep specialists have told me that home studies are not appropriate for many people with mild sleep apnea for a range of reasons, one of them is that people with mild sleep apnea can have other causes of their daytime symptoms that may need assessing with a MSLT or MWT (that’s just one reason, there are others). Home studies are also not suitable for complex breathing disorders. The people this effects more than anyone else is people with Narcolepsy and Idiopathic Hypersomnia.

I can not stress enough that people with these diseases MUST have an on-site sleep study that involves a MSLT to access medication, and in some cases they may also need to do a MWT to retain their drivers licence. This is not their choice, this is not a money making exercise via the MBS by sleep specialists. The PBS and various State S8 medication laws require people with N and IH to have a MSLT. ie; one government rule has now made it extremely difficult for people with N and IH to comply with other government rules regarding access to the only treatment available to them.

This is unacceptable. I will be meeting with others to discuss this issue further.

What does that mean to people that need a PSG/MSLT?

If you do not have Gold (top level) hospital cover your only option is to go on a public hospital waiting list - or you can have the study done in a private hospital at your (massive) expense. Waiting lists vary from State to State but we know that in SA this is a big problem with the likely loss of the RAH sleep lab, it only leaves QEH and Flinders and in Brisbane there is approx only a dozen public beds available.

What can you do about it?

If you are faced with a lengthy wait time for a PSG/MSLT urge your doctor to write to the local area health authorities who helped create this situation (they will or should know who this is). Also urge them to express their concerns to the ASA. If you really want to make a difference write to the Federal Health Minister, Greg Hunt. This is a link to his contact details including his social media. Make some noise on that!

To understand a more about it read the MBS factsheet. In a post by the Limbic Dr Barnes (ex ASA President) said “This is a way of giving patients more access to sleep studies and expedite them.” Yes, more access to a subgroup of patients but at a cost to access to sleep studies for other sleep disorder patients!

I agree with what Maree has said here “In the past all (sleep studies) were done under 12203 so when we are looking at the data we don’t know who is having what type of sleep study for what indication. That makes it very difficult to plan delivery of services.” However, if the ASA are happy with the outcomes, “Dr Barnes says the ASA is happy with the outcomes of the MBS Review... “We think this is a good outcome for patients that is hopefully going to lead to better outcomes, better and more clear management pathways...” the ASA have clearly neglected to consider the impact this was going to have on all people with sleep disorders.

I will keep you posted....

Michelle Chadwick Founder/Executive Director Hypersomnolence Australia Director of Sleep Disorders Australia

The pre-existing sleep laboratory in the ‘old’ Royal Adelaide Hospital (RAH) did not get moved over in the shift to the new RAH. Hospital managers, in their wisdom decided that people can use the sleep services at Adelaide's Queen Elizabeth Hospital (QEH). However, the QEH is already struggling under the pressure of the closure of the Repatriation Hospital. Central Adelaide Local Health Network chief executive Jenny Richter has also said that many patients can have sleep studies at home.Two things that have not been considered in this decision: 1. An onsite Sleep Laboratory is an essential facility in a modern hospital. It is a vital part of a complete diagnostic and treatment service addressing the needs of the 1 in 3 Australians who suffer from respiratory illnesses and nearly 1 in 10 Australian adults with sleep disorders. There are more than 1.6 million people living in South Australia, you don’t need to be too bright to work out that this decision will put an enormous strain on the QEH and will extend wait times for onsite sleep studies to an unacceptable level. 2. While home sleep studies can now be performed in many patients, advanced age, frailty and the high prevalence of severe co-morbidities in public hospital patients dictates the need for supervised onsite sleep studies in as many as 50% of patients. In addition to that people with Narcolepsy and Idiopathic Hypersomnia (IH) simply cannot have a sleep study in their own home. They must have an on-site sleep study. In fact unless they have an on-site sleep study they cannot access treatment. It is already difficult for people with IH and Narcolepsy to be accurately diagnosed in a timely manner (on average it takes at least 10 years to receive an accurate diagnosis). Without on-site sleep lab services at the new RAH the diagnosis and treatment of people with IH and Narcolepsy will be severely comprised.What are we doing about it? Hypersomnolence Australia has been instrumental in the push to have the sleep lab from the old RAH moved to the new RAH. We started an online campaign with social media posts and with the support of the Australian Medical Association (South Australia), along with the Sleep Health Foundation, Sleep Disorders Australia and Narcolepsy Australia we started an online petition. The petition received over 2000 signatures in just 10 days. The petition was sent to the SA Minister for Health and Wellbeing, Steven Wade and Jenny Richter on the 5th November. Our efforts resulted in ABC News doing a print story and TV interview (see below).