Hypersomnolence Australia's Articles

24. May, 2017

Are you considering enrolling in University, preparing for a new study period or are already in the throes of studying? Did you know that all Australian universities have disability services that can provide ongoing support for students with a disability?

The first thing you need to do is let your universities disability services know that you have a disability. It’s best to do this when you enroll. If you didn’t, make an appointment with a Disability Advisor as soon as possible.

What kind of support do they offer?
Each university offers its own unique service however in general if your studies are affected by a disability, learning disorder, injury or chronic illness, Disability Services can provide assistance, advocacy, and reasonable academic adjustments.

Don’t have a disability yourself however you are the primary carer of someone that does? Most Universities have programs that extend their support to primary carers. Swinburne's AccessAbility Services is one example. They work with students living with a disability as well as those with primary carer responsibilities. They will negotiate a range of reasonable adjustments to ensure equal opportunity to access and participate in education at Swinburne. Contact your university to find out what services are available to you.

Below you will find links and other contact information for 35 Australian Universities. If you can’t find your university contact your student services.

Australian Catholic University
Equity and Disability Unit
Tel: +61 7 3623 7377
Email: carolyn.toonen@acu.edu.au
Web: http://www.acu.edu.au/student_experience/support_services/disability_services

Australian National University
http://www.anu.edu.au/students/information-for/students-with-a-disability

Bond University
Tel: +61 7 5595 4002 (Mon-Thurs)

Email: disabilitysupport@bond.edu.au
Web: https://bond.edu.au/current-students/services-support/services/disability

Charles Darwin University
Office of Student Administration and Equity Services

Tel: +61 8 8946 6288
Fax: +61 8 8946 6654
Email: kerrie.coulter@cdu.edu.au
Web: www.cdu.edu.au/equity-services/disability-services

Charles Sturt University
http://futurestudents.csu.edu.au/unilife/support/disability-support

Curtin University
Disability Services

Tel: +61 8 9266 7850
Email: disabilityservices@curtin.edu.au

Deakin University
http://www.deakin.edu.au/students/health-and-wellbeing/disability-support

Flinders University
Disability Advisor
Tel: 8201 2118

Email: disability@flinders.edu.au
Web: http://www.flinders.edu.au/current-students/healthandcounselling/disabilities.cfm

Griffith University
Tel: +61 7 3382 1159
Fax: +61 7 3382 1103
Email: disability-oua@griffith.edu.au
Web: www.griffith.edu.au/student-services/diversity-and-inclusion/students-with-disabilities

La Trobe University
Equality and Diversity Centre

Tel: +61 3 9479 2900
Email: equity@latrobe.edu.au
Web:  http://www.latrobe.edu.au/students/wellbeing/studying-with-a-disability

Macquarie University
Disability Support Unit

Tel: +61 2 9850 7497
Fax: +61 2 9850 6063
Email: campuswellbeing@mq.edu.au
Web: mq.edu.au/disability

Monash University
https://www.education.gov.au/higher-education-disability-support-programme

Murdoch University
OUA Liaison Team

Tel: (08) 9360 6084
Email: equity@murdoch.edu.au
Web: https://our.murdoch.edu.au/Student-life/Health-and-happiness/Disability-services/

Open Universities:
OUA Disability Contact Officer
Email: disability@open.edu.au

Web: https://www.open.edu.au/student-admin-and-support/student-support-services/disability-support

Queensland University of Technology

Disability Services
Email: student.disability@qut.edu.au

https://www.qut.edu.au/study/student-life/student-support/disability-support

RMIT University
Equitable Learning Services

Tel: +61 3 9925 1089
Email: els@rmit.edu.au
Web: www.rmit.edu.au/equitable

Southern Cross University
http://scu.edu.au/equity/index.php/74/

Swinburne University
AccessAbility Services

Tel: +61 3 9214 8513 (Mon-Thurs)
Email: accessability@swin.edu.au
Web: www.swin.edu.au/accessability/

University of Adelaide
Tel: 8313 5962
Email: disability@adelaide.edu.au
Web: https://www.adelaide.edu.au/disability/

University of Canberra
http://www.canberra.edu.au/current-students/canberra-students/student-support/inclusion-engagement/support-for-students-with-disability

University of Melbourne
http://services.unimelb.edu.au/student-equity/home

University of Newcastle
Email: student-disability@newcastle.edu.au

Web: https://www.newcastle.edu.au/current-students/support/disability-support

University of New England
Student Disability Support

Tel: +61 2 6773 2897
Fax: +61 2 6773 4400
Email: tony.woods@une.edu.au
Web: www.une.edu.au/current-students/support/student-support/disability-support/disability-support-1

University of NSW
https://student.unsw.edu.au/disability

University of Queensland
Disability Advisor, Student Services

Tel: +61 (7) 3365 1704
Email: disability@uq.edu.au
Web: http://www.uq.edu.au/student-services/disability

University of South Australia
Disability Services

Tel: 1300 657 122 or +61 8 8302 2330
Fax: +61 8 8302 2363
Email: disability@unisa.edu.au
Web: www.unisa.edu.au/Student-Life/Support-services/Disability-Services/

University of Southern Queensland
https://www.usq.edu.au/current-students/services/disability

University of the Sunshine Coast
http://www.usc.edu.au/learn/student-support/disability-and-equity

University of Sydney
http://sydney.edu.au/study/academic-support/disability-support.html

University of Tasmania
http://www.utas.edu.au/students/shw/disability

University of Technology Sydney
Accessibility Services

Tel: +61 2 9514 1177
Email: accessibility@uts.edu.au
Web: https://www.uts.edu.au/current-students/students-with-accessibility-requirements/accessibility-service

University of Western Australia
UniAcess - UWA's Disability Office

Tel: +61 8 6488 2423
Fax: +61 8 6488 1119
Email: uniaccess@uwa.edu.au
Web: www.transition.uwa.edu.au/welcome/disability_office

University of Western Sydney
https://www.westernsydney.edu.au/currentstudents/current_students/services_and_facilities/disability_service

University of Wollongong
Tel: 02 4221 3445
Fax: 02 4221 5667
Email: disability_services@uow.edu.au
Web: https://www.uow.edu.au/student/disability/index.html

Victoria University
https://www.vu.edu.au/current-students/campus-life/advice-support/disability-support

 Image credit: Swinburne University AccessAbility Services logo

9. May, 2017

Over the past four decades, Prof. Michel Billiard has published numerous articles on narcolepsy with cataplexy and other hypersomnias of central origin, particularly Kleine-Levin Syndrome and Idiopathic hypersomnia. I spoke with Prof Billiard for the tribute “Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia”  that I wrote for the Idiopathic Hypersomnia Awareness Week 2015. The theme for this year’s awareness week is research so I’m looking forward to speaking with him (and other researchers) again.

In this interview with Revista de Neurología for the 8th European Narcolepsy Day 2017 Prof. Billiard talks about the aetiology of narcolepsy with cataplexy, his thoughts on new treatments in Narcolepsy such as Sodium Oxybate (Xyrem) and Pitolisant (Wakix) and also his study using a hierarchical cluster analysis (Sleep Med, 2015). This study was based on patients with narcolepsy and idiopathic hypersomnia and it showed idiopathic hypersomnia with long sleep is distinct and unique and is therefore an independent sleep disorder of idiopathic hypersomnia without long sleep. The study also showed, which has been the long held belief of many researchers, that the clinical features of idiopathic hypersomnia without long sleep are more closely related to those found in narcolepsy without cataplexy (Type 2 Narcolepsy) and that those two disorders should be merged into one single condition.

Click here to read the interview. 



Who is Prof. Michel Billiard?

Prof Billiard is Honorary Professor of Neurology at the School of Medicine, University Montpellier I and Honorary Chair of the Department of Neurology, Gui de Chauliac Hospital, Montpellier (France). He has been President of the European Sleep Research Society (1996-2000) and is the first Honorary member of the EU-NN, elected in the last European Narcolepsy Day in Helsinki (March 2016). He was the instigator of the European Collaborative Project on Genetic Susceptibility to Narcolepsy (1995). Over the past four decades, he has published numerous articles on narcolepsy with cataplexy and other hypersomnias of central origin, particularly Kleine-Levin Syndrome and Idiopathic hypersomnia.

10. Mar, 2017

The 2017 World Sleep Day slogan is, “Sleep Soundly, Nurture Life.” This focus is purposefully broad in meaning, surrounding the message that quality of life with a sleep disorder can be improved, but recognition of sleep’s importance for overall health and well-being must come first. Though most sleep disorders are preventable or treatable, less than one-third of sufferers seek professional help.

Sleep Impacting Disease

Sleep has a health impact on the prevalence of natural diseases. Current research suggests stroke and heart failure are more prevalent in people living with Obstructive Sleep Apnea (OSA). World Sleep Day aims to inform the world about the importance of treating even mild sleep disorders. Individuals who struggle to get an entire night’s sleep without any interruptions experience higher rates of high blood pressure, diabetes, obesity and other chronic illnesses.

Sleep Impacting Psychological Disorders

Studies have shown that people with poor quality sleep suffer from more symptoms of anxiety and depression than people without poor quality sleep. Research has also revealed that individuals with depression experienced lower quality sleep than those with no history of depression. Research is underway to better understand the link between sleep quality and mental health.

General FACTS

  • Consistently sleeping for more than nine hours or fewer than eight hours a day has a negative impact on physiological, psychological and cognitive functions.
  • Breathing regularly during sleep is critical to maintain well-being and health. Persistent interruption of the breathing function during sleep is called sleep apnea. This is a pervasive and common disorder that affects 4% of men and 2% of women.
  • Obstructive sleep apnea causes daytime sleepiness and fatigue and significantly impacts health and well-being. The drop in oxygen that occurs when breathing stops puts a strain on the heart and can lead to a number of serious health conditions including hypertension, heart disease, stroke, and diabetes.
  • Lack of sleep or poor quality sleep is known to have a significant negative impact on our health in the long and short term. Next day effects of poor quality sleep include a negative impact on our attention span, memory recall and learning. Longer term effects are being studied, but poor quality sleep or sleep deprivation has been associated with significant health problems, such as obesity, diabetes, weakened immune systems and even some cancer.
  • Lack of sleep is related to many psychological conditions such as depression, anxiety and psychosis.
  • Quality sleep is crucial to ensure good health and quality of life.
  • Three elements of good quality sleep are:
    • Duration: The length of sleep should be sufficient for the sleeper to be rested and alert the following day.
    • Continuity: Sleep periods should be seamless without fragmentation.
    • Depth: Sleep should be deep enough to be restorative.

Known Consequences: Some Statistics

  • A US study has estimated the annual costs of insomnia to be between $92.5 billion and $107.5 billion. The annual economic burden of undiagnosed sleep apnea among U.S. adults is approximately $149.6 billion.
  • Patients with Idiopathic Hypersomnia and Narcolepsy have twice as many total annual medication transactions and an overall significantly higher average of medical services costs than those without the sleep disorders.
  • Because of the severity of Idiopathic Hypersomnia and Narcolepsy, patients also often bear indirect costs related to their increased risk of accidents, higher likelihood of unemployment, and loss of academic opportunities.
  • The most common and most destructive symptom of Restless Legs Syndrome (RLS) is sleep disturbance. More than two-thirds of RLS patients experience serious insomnia, waking up several times per night is typical for RLS patients. RLS also disrupts rest during waking hours, such as when the patient is sitting or relaxing. Thus, whether awake or asleep, patients with RLS find little opportunity for the general restorative behaviours necessary for healthy human functioning, resulting in high rates of comorbidities including depression, anxiety, and hypertension.
  • 71,000 people suffer injuries every year due to sleep-related accidents.
  • 1,550 people die because of sleep-related accidents.

If you suffer from poor quality/disturbed sleep, wake up feeling unrefreshed or have trouble staying awaking during the day see your doctor, you may have a sleep disorder. Many sleep disturbances and sleep disorders can be managed with the right treatment and perhaps sensible lifestyle adjustments.

1. Mar, 2017

HYPERSOMNOLENCE AUSTRALIA CELEBRATES 4 YEARS AS A NOT FOR PROFIT HEALTH PROMOTION CHARITY 

New directions and exciting partnerships….

We have learnt a lot about Idiopathic Hypersomnia and about sleep medicine in general since Hypersomnolence Australia was officially launched in March 2013. We have learnt that sleep medicine is a fairly young medical specialty in not only Australia but the rest of the world too. When we first started Hypersomnolence Australia we were surprised to learn that sleep training for GP's was almost non existent. We were even more surprised to learn that there were too few specialty training posts for doctors in Australia that could provide broad exposure to and quality training in, the whole range of sleep disorders, particularly non-respiratory sleep disorders. We have also found this to be the case in other parts of the world too. It has certainly explained why there was a lack of awareness and quality information available about Idiopathic Hypersomnia and why there were no support services available to patients, no research being done (in Australia) and no approved medications (anywhere in the world).

While there are organisations that represent sleep health and others that represent specific sleep disorders there were no organisations anywhere in the world that catered specifically to Idiopathic Hypersomnia. When patients were diagnosed there was nowhere for them to go for information so that they could better understand the condition and the implications it has on quality of life. There was nowhere for them to direct family and friends to either which made explaining it to others very difficult.

At the beginning of 2013 we set out to change that by setting up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. Hypersomnolence Australia was registered as a Health Promotion Charity in March that year. We are still the only Not for Profit health promotion charity dedicated to Idiopathic Hypersomnia in Australia but we are pleased to say that there are now other organisations, the Hypersomnia Foundation and Atlanta Hypersomnia Support in the US on board with us raising awareness and providing support and information for Hypersomnia.

We shared this post last year on our 3rd anniversary so the direction is not so much new to us however it might be new to others that are unaware of Hypersomnolence Australia’s goals and purpose. 

We will continue to move in the direction mentioned in that post and look forward to working with Sleep Disorders Australia on joint projects that see both organisations reach common goals.