Sleep Disorders Australia will be participating in the 2019 People's Choice Community Lottery. Tickets on sale online now - ONLY $2 A TICKET! And we get to keep 100% of every $2 ticket we sell! Click on the link https://communitylottery.peopleschoicecu.com.au/public/community-groups/sleep-disorders-australia/ to purchase your tickets. By buying tickets in the Community Lottery, you're not only helping Sleep Disorders Australia, you'll also go into the draw to win 115 prizes worth more than $360,000, including a 2019 Toyota RAV4 GXL and 2019 Toyota Corolla Ascent Sport thanks to CMI Toyota and an Ultimate Home Package worth $20,263 from Harvey Norman! FULL LIST OF PRIZES BELOW. Online Early Bird Prize Toyota Yaris Ascent 1.3L Petrol Auto 5 Door Hatch. Prize includes on road costs - colour selected by winner. Tickets purchased by 10 May 2019 - Prize drawn 29 May 2019
All non winners of the early bird draw will still be in the final prize draw on 9 October 2019. Tickets for the final draw on sale until 11.59pm ACST 30 August 2019. Prize winners advertised 13 October 2019.
FOR IMMEDIATE RELEASE 10 April 2019
Obstructive sleep apnea (OSA) is one of the most common sleep disorders diagnosed in Australia. 25% of men and 9% of women have OSA however after menopause women are just as likely to have OSA as men. OSA occurs when a person’s airway repetitively collapses during sleep, meaning that they physically are not able to take air into their lungs due to an obstruction in the upper part of the airway. This disrupts the brain's restful nights sleep as it has to constantly work to open up the airway. The brain 'wakes up' but the person may feel they are still asleep. These pauses in breathing also mean that the body does not receive the oxygen it needs to function properly, which can result in an array of other health problems.
Classic signs and symptoms of OSA include:
Due to the stress that OSA places on the body it has been found to be associated with a number of other serious medical conditions. If OSA is left untreated, it can result in hypertension, depression, vascular disease, congestive heart failure, heart attack, type 2 diabetes, stroke, and even premature death. It is also associated with a higher incidence of motor vehicle and industrial accidents. A common misconception is that OSA only affects older, overweight men, but this is not the case. Anyone can have OSA regardless of gender, age or body type.
Children can also have OSA. Risk factors for children include enlarged adenoids and tonsils, allergies, asthma, obesity and facial differences such as a small jaw or large tongue. Signs of sleep apnea can also be different to those in adults. Sometimes a child's symptoms can present as ADHD (Attention Deficit Hyperactivity Disorder) such as hyperactivity, aggressiveness, learning difficulties and poor concentration. Bed wetting, less growth potential, poor sleep and difficulty waking in the morning are also associated with sleep apnea in children.
It is our goal to raise awareness of all aspects of sleep apnea, including how it impacts a sufferer’s life by sharing stories of people living with sleep apnea. We also aim to dispel the myths associated with sleep apnea. It is estimated that as many as 26% of adults aged 30-70 years have obstructive sleep apnea. Contrary to popular belief, sleep apnea patients come in all shapes and sizes, not all sleep apnea sufferers snore, many are not obese or even overweight, and not all of them are male. The first annual Australian Sleep Apnea Awareness Day will be held on Sunday 5th May 2019. Please join us and help raise awareness of this potentially life-threatening sleep disorder.
About Sleep Disorders Australia
Sleep Disorders Australia is Australia’s only Not for Profit organisation that represents people with all sleep disorders. We provide support and information and we also advocate and raise awareness of sleep disorders and the significance they can have on the lives of those affected by them.
-Ends--Contact Michelle ChadwickDirector: Marketing/Public Relations[email protected] or Ph: 0405 917 736
Download a copy of our Media Release here
We will start with Dr Rebecca Oliver. Rebecca joined us recently as our Victorian State Manager. She has also just taken over the role of our Sleep Apnea Coordinator and is also part of our Sleep Apnea Awareness Day organising committee.
Dr Rebecca Oliver BDSc (Hons) Melb
Graduating as a dentist with Honours from the University of Melbourne in 2000, Dr Rebecca Oliver worked as a general dentist for 8 years. In 2009 she sold her general practice to work exclusively in Dental Sleep Medicine, helping people affected by snoring and Obstructive Sleep Apnoea.
Since 2008 Rebecca has fitted over 1200 patients with custom made adjustable "Mandibular Advancement Splints" (the medical term for any style of snoring and sleep apnoea mouth guard). These patients have had long term follow up to ensure treatment success. She utilises eight styles of TGA approved oral devices to ensure a discrete, comfortable and effective treatment for every individual.
Few dentists in the country have had such long term extensive experience with oral appliance therapy. Her passion is found in helping people rediscover their zest for life and improving relationships after years of poor sleep, loud snoring, and even separate sleeping arrangements. “Some say I have rescued marriages and saved thousands on separate hotel rooms when travelling.”
Working closely with GPs, Sleep Physicians, or ENTs, Rebecca treats patients with a range of symptoms and comorbidities who cannot or will not tolerate CPAP for treatment of their sleep apnoea.
Rebecca is certified by the Dental Practice Board of Victoria and the Australian Health Practitioner Regulation Agency.
Rebecca is a member of the;Australian Sleep Association Australian Dental Association Sleep Disorders Australia Sleep Health Foundation
Learn more https://www.sleepoz.org.au/events/sleep-apnea-awar...
On 23 November I wrote a post (see below) 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:
House of Representatives. Standing Committee on Health, Aged Care and Sport. Sleep Health Awareness in Australia Michelle Chadwick
Professor Grunstein has been made a Member of the Order of Australia in this year's Australia Day Honours."For significant service to medical education and research in the field of sleep disorders."Read more about Prof Grunstein’s achievements here>>
Members of the board would like to thank everyone who participated in our community raffle fundraiser this year. The raffle was drawn on January 21st with the following results:
1st Prize, ticket number HR14851 went to Mr P Codd2nd Prize, ticket number HR23056 went to S Morante and3rd Prize, ticket number HR60869 went to B Black.Notification of winners is also in the Sydney Morning Herald Wednesday 23rd January 2019 in the classified section.
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*. SDA Director Michelle Chadwick and our newsletter editor (also a Narcolepsy Australia committee member), Pamela Bird have been invited to attend and give an opening statement at this very important discussion.*The public hearing was rescheduled by the Government at the last minute. It will now be held on 11th Feb 2019.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
• Current national research and investment into sleep health and sleeping disorders.
Update 26th November:
The program has been announced. There will be four sessions in the program, 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 Association
Canberra Sleep Clinic
CRC for Alertness, Safety and Productivity
Department of Health
Let Sleep Happen
Pharmaceutical Society of Australia
Public Health Association of Australia
Royal Australasian College of Physicians
Safe Work Australia
Sleep Disorders Australia
Sleep Health Foundation
Woolcock Institute of Medical Research
Michelle and Pam will write a joint report about the roundtable public hearing for our next edition of SDA News. You can follow the inquiry and learn more about who is on the committee at the Parliament of Australia website. https://www.aph.gov.au/Parliamentary_Business/Comm...
The Queensland branch manager and SDA Chairman, Joe Soda and Qld committee member and board member Michelle Chadwick represented SDA at the recent Australasian Sleep Association (ASA) conference, Sleep DownUnder that was held in Brisbane 17-20 October 2018. This was a great opportunity to network with key industry representatives. We had meetings with a number of stakeholders including members of the ASA and also sponsors and prospective sponsors. Michelle was also a speaker at one of their short courses "Assessment and Treatment of Excessive Daytime Sleepiness: Risk, Rewards and Patient Perspectives on Stimulant Use”.
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?
SDA 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, Hypersomnolence 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.
This doesn’t affect me, I don’t live in SA.
Not true, this decision affects us all. The RAH has been one of Australia’s leading training facilities and has contributed to valuable research. This is part of a Facebook post I wrote on 22nd October “…This goes beyond there not being a public sleep lab in which people can have inpatient sleep studies. No sleep lab = no training facility. Qualified sleep specialists that are trained in all aspects of sleep and sleep disorders are few and far between as it is. We cannot afford to lose a training facility in one of Australia's major cities. No sleep lab = no facility to undertake clinical trials to allow patient access to therapies and clinical/scientific research to progress sleep medicine and science…”
The fight is not over... if you would like to express your concerns directly you can send them to: Minister for Health and Wellbeing, Steven Wade [email protected]
cc: Ms Jenny Richter email: [email protected]
by Michelle Chadwick
The 2018 Sleep Awareness Week will be focusing on caffeine and the role it has on society. Caffeine can be very effective for improving your concentration, alertness and energy. However, if you consume caffeine on a daily basis these positive effects can be brief and it can reduce the quantity and quality of your sleep. If you use caffeine to counter tiredness, feeling sluggish, or difficulty concentrating it could also be masking a sleep disorder. Read more here
Idiopathic Hypersomnia Awareness Week® (IHAW) is held from 3rd to 9th and Restless Legs Awareness Day (RLSAD) is on September 23.Read more about the IHAW here and read more about the RLSAD here.
The Sleep Disorders Australia Annual General Meeting will be held @ 7.00pm Monday 29th October 2018 to be held in Sydney. As per Sleep Disorders Australia’s Management Guidelines there are two board positions that will become vacant. The positions are Company Secretary and a shared Publications role/Sleep Apnea Coordinator.
The Publications role includes assisting with the management of our website and other IT requirements. Advanced Microsoft Office skills desirable. The Sleep Apnea Coordinator duties are as follows:
• Coordinate our CPAP “buddy” program, ie: keep an updated list of who our buddies are and refer people to them when necessary.
• Keep sleep apnea info eg; factsheets and website content etc up to date.
• Keep abreast of any relevant new research discoveries. Also, policy decisions regarding the Department of Health ie: MBS, PBS etc that affect sleep apnea sufferers. And benefits for sleep apnea sufferers eg: health fund rebates and other related government rebates.
• Share relevant news, information and research etc with our Publications Director ie: for the newsletter, website, social media.
• Maintain the used CPAP ad page on SDA’s website.
• Work with the Marketing Director on the annual Sleep Apnea Awareness Day.
• Work with others on updating our current presentation.
• It would be desirable if the sleep apnea coordinator was an active member of SDA’s private Facebook Support Group (or preferably a group admin alongside our other admins).
If you have experience and time to volunteer for either the role of Company Secretary or (shared) Publications/Sleep Apnea Coordinator please forward your nomination to [email protected]. Nominations are open until 31st August.PLEASE NOTE: All work is done online, however as a Board Member you would be required to attend the National AGM (expenses paid). The board generally meets a few times via teleconference throughout the year although there may be one other mid year face to face board meeting that you would be required to attend.
Friendly reminder! Membership renewals are now overdue. If you haven't already please renew as soon as possible.
Exciting news for members is that we have reduced membership costs – $25.00 for yearly membership with an electronic newsletter copy, $30.00 yearly for a hard copy posted.PLEASE NOTE:We have a new Treasurer and Membership Director, Karalyn Patrick.Emails to: [email protected]Postal address is:P.O. Box 455 Willunga SA 5172
The 2017 Nobel Prize in Physiology or Medicine was jointly awarded to Jeffrey C. Hall, Michael Rosbash and Michael W. Young for their “discoveries of molecular mechanisms controlling the circadian rhythm”..To honour this great achievement the slogan of World Sleep Day 2018 is ‘Join the Sleep World, Preserve Your Rhythms to Enjoy Life’. The goal is to raise awareness of the importance of circadian rhythms in healthy sleep. More info HERE.
SDA runs its Annual Appeal each year leading up to the end of the financial year. SDA receives no government funding, and relies on membership subscriptions and donations to fund its activities. Donations are tax deductible. See info HERE.
The RLS Foundation (USA) offers free webinars on topics that are relevant to understanding and coping with Restless Legs Syndrome (RLS). Their one-hour webinars include a Q&A session after the speaker. This is a great opportunity to share questions and comments with other patients, medical professionals and RLS experts. When you register for the webinar you can submit your questions on the topic to be answered as time allows.
Their next webinar is on Tuesday, March 14th, 2018. Click HERE for more details
Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles. 10th March 2018 marks Suddenly Sleepy Saturday - aka Narcolepsy Awareness Day. learn more about this condition and how it can affect people. See info HERE
A US study has found that a drug with a similar composition to synthetic could be a safe and effective treatment for obstructive sleep apnea. See article in the March 2018 issue of the SDA News.
28 February 2018 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research. See Info HERE.
SDA has launched campaigns in Queensland and Tasmania to educate people about the dangers of driving when tired. We hope to extend the campaign nationally. Read more HERE.
The Annual Rotary Christmas Raffle was drawn on Monday 15 January at the Merrylands Bowling Club. Unfortunately, none of the tickets sold by SDA were among the winners. Details found here.
New Australian research has discovered that dementia in the elderly can be predicted by measuring REM sleep. Read the article in the December issue of the SDA News.
The 2017 Nobel Prize in Physiology or Medicine has been jointly awarded to Jeffrey C. Hall, Michael Rosbash and Michael W. Young for their “discoveries of molecular mechanisms controlling the circadian rhythm”. Read more HERE.
New research from UCLA has discovered evidence that a gene in skeletal muscle controls the ability to rebound from sleep deprivation. This surprising evidence could lead to alternative treatments for insomnia, other than medications that target the brain. Read more in the October issue of the SDA News.
People with obstructive sleep apnea (OSA) may be at a higher risk of developing atrial fibrillation or irregular heartbeat. Canadian researchers have published a recent study, which has been summarised in the August issue of the SDA News.
Researchers in Europe have found that insomnia can be linked to an increased risk of heart attack and stroke. A short report and the summary of findings was included in the June 2017 issue of the SDA News.
A study of children with sleep apnea has found significant reductions of grey matter in several regions of the brain. The findings point to a strong connection between sleep disturbance and the loss of neurons in the developing brain. A report on the research and findings is included in the June 2017 issue of the SDA News.