Issue No. 1, 2013 Luke Quinlivan & Riley Elson Raising awareness! Inside ¢ Nathan Jolliffe: Stands up for epilepsy ¢ RED update ¢¢OutstandingEdward Lear & person ‘Ode to withNonsense’ epilepsy ¢ YouTube2012: Martin epilepsy Raffaele review ¢¢ Celebrating Epilepsy & genetics our young ¢ The Purple ‘E’ word: Day epilepsy heroes and¢ discriminationTelehealth ¢¢Tim Megan Kennerway Howe wins: aIBE son’s Journalism tribute Award ¢ EFV ¢ forgesModified partnership Atkins Diet WELCOME Welcome to the latest edition of The Epilepsy Report. Epilepsy discrimination in the community and workplace was CONTENTS the focus of our national awareness campaign for 2013. Newly published data from the Epilepsy Foundation of Victoria’s Longitudinal Survey, The ‘E’ Word: Epilepsy and Perceptions of Unfair Treatment, highlighted the fact that the level of unfair treatment within the workplace was still unacceptably high. This research, along with individual stories and interviews, was well reported in the media nationally in the lead up to Purple Day for Epilepsy Awareness. We congratulate medical writer Megan Howe whose report Getting Ahead of Epilepsy describing Professor Mark Cook’s pioneering work in neurobionics won the print section of the UCB Pharma sponsored International Bureau for Epilepsy Excellence in Epilepsy Journalism Image courtesy The Epilepsy Centre, SA & NT Award for 2012. We are delighted to reprint her article here on page 5. 5 15 While technology offers the promise of new and innovative treatments, it also provides new ways for people with epilepsy to 18 20 engage with the world. On page 8 we read how Scarlett Paige found a kindred spirit in Lauren on Facebook and together travelled to Purple Day: The “E” Word and Washington where they ‘walked for epilepsy’. YouTube has allowed others to express their own experiences and reflections on how epilepsy impacts on their lives. Toba Schwaber Kerson’s study on epilepsy discrimination page 9 of YouTube videos poignantly reveals these appeals for a better eralding Epilepsy Australia’s 2013 per cent), followed by exclusion (11 per believe it is a psychiatric problem,” Purple Day Media Campaign cent), and collectively assault, bullying Professor Cook said. understanding of epilepsy to an anonymous audience. H was the publication of The “E” Word: and teasing in school, workplace and “If more people acknowledged And finally, taking centre stage is the Slingsby Theatre’s opera, Ode Epilepsy and Perceptions of Unfair community settings (5 per cent). epilepsy as a neurological condition with to Nonsense, celebrating the life of Edward Lear. In his review on page Treatment, research findings from the “We asked respondents to elaborate a range of causes, just like heart disease 15 Jim Chambliss discusses Lear’s epilepsy and the impact it had on 2010 Australian Epilepsy Longitudinal on these experiences, and received or stroke, it would help those living with his creativity that allowed him to produce such wonderful nonsense Survey. Epilepsy & Behavior, Volume 27, some disturbing responses. One carer the condition lead a normal life.” verse as The Owl and the Pussycat, enjoyed to this day by adults and Issue 1, April 2013, Pages 251–256. who participated in the study on behalf Raising awareness of epilepsy and children alike. Dr Michelle Bellon, lead study author, of a young boy living with epilepsy, its impact on people’s lives is what Disability and Community Inclusion, revealed that other parents at the child’s Purple Day is all about. With the help Flinders University and Board member kindergarten would not let their children of an ever-increasing band of supporters of The Epilepsy Centre SA & NT, near the boy ‘in case their child got sick Purple Day events were held around the Views expressed and information Editor The “E” word shines light on discrimination 3 says the research findings from the and ended up like him’,” Dr Bellon said. country. Highlights included: Denise Chapman included herein do not national longitudinal study highlight necessarily reflect official policies 2013-2017 IBE Executive & WPR Executive Professor Mark Cook, Chair of Kicking off Purple Day in Victoria at Contributing Editors 4 of Epilepsy Australia. Articles the significant threat of epilepsy to a Medicine and Director of Neurosciences, the Melbourne Storm vs Roosters NRL Robert Cole, Dr Robert Mittan Vale: Dr Michael Hills 4 covering medical aspects are not person’s mental health and wellbeing. St Vincent’s Hospital, Melbourne and match Dr Frank Vajda, intended to replace competent Excellence in Epilepsy Journalism Award winner “Unfair treatment and stigma President of the Epilepsy Foundation Family fun days held in NSW, Dr Christine Walker medical, or other health may lead to stress, which is likely to PLUS Megan Howe: Getting Ahead of Epilepsy of Victoria, says all Australians can Victoria and South Australia Contributors professional advice. 5 exacerbate epilepsy symptoms. This play a role in addressing the stigma and Cupcakes in the Park at Caboolture, Jim Chambliss, Ding Ding, Megan All content is copyright and may Epilepsy Foundation of Victoria wins Disability Award 7 can also trigger other health problems, discrimination associated with epilepsy. Qld hosted by Federal MP Wyatt Roy Howe, Toba Schwaber Kerson, not be reproduced without prior Walking for epilepsy: Scarlett Paige 8 such as depression and anxiety,” said “Study respondents described permission. Contributions are Epilepsy Queensland’s 2nd Annual Schichu Li, Yvette McMurtrie, Dr Bellon. “Most concerning is that several possible causes for their unfair Scarlett Paige welcome. The Editor reserves the Epilepsy on YouTube: Toba Schwaber Kerson 9 Purple Day Procession along Southbank despite Australian anti-discrimination treatment, which ranged from poor right to edit content for reasons of in Brisbane Jim Chambliss: Celebrating Edward Lear 15 laws, the level of unfair treatment community understanding of epilepsy Photography space or clarity. Purple Day Bakeoff in WA Robert Cole, Dreamstime.com, Epilepsy Care in China within the workplace reported by our (20 per cent), to social judgement and Epilepsy Australia Affiliates: 17 Local events held in Tasmania and Slingbsy Theatre survey respondents indicates additional avoidance (12 per cent), to comments Epilepsy ACT Yvette McMurtrie reviews Modified Atkins Diet 18 ACT. Epilepsy Queensland Inc mechanisms are required to uphold a highlighting fear of seizures, intolerance Print Pegasus Print Group We thank all the schools, businesses, Epilepsy Association of SA/NT Epilepsy & genetics 20 code of acceptable conduct.” and disbelief about the hidden effects of our Everyday Heroes and their generous ISSN 1836-747X Epilepsy Tasmania The research reveals among those their epilepsy,” said Professor Cook. Epilepsy Foundation of Victoria Electronic Health Record & you 22 supporters, who not only raised patients and carers who cited unfair “Stigma still represents the biggest The Epilepsy Report is published Epilepsy WA Face2Face with Leigh Gilbert 23 awareness of epilepsy but also donated by Epilepsy Australia Ltd treatment due to their epilepsy at some challenge for people with epilepsy, much needed funds in support of the 857 Canterbury Road stage in their lives, 44 per cent had affecting their personal life and work work of their state association. Surrey Hills VIC 3127 Australia experienced unfair treatment within the environment. Tel: 02 9686 8162 last 12 months. “Like all discrimination, it is based 2013 Purple Day pictorial adorns the back cover – thank you! [email protected] National Epilepsy Helpline Among the most common types of on ignorance of the issue at hand. Sadly, cover: The Owl & The Pussycat, unfair treatment reported, the most some people still believe epilepsy is Courtesy Slingsby Theatre 1300 852 853 www.facebook.com/epilepsyaustralia www.epilepsyaustralia.net frequent response was discrimination (47 infectious or contagious, and many 2 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 3 IBE Executive Getting ahead of 2013–2017 t the 30th International Epilepsy Congress, held in EPILEPSY AMontreal in June, the newly elected IBE Executive officially took office. The Excellence in Journalism Award, an initiative of the IBE For the next four years, the IBE will be led by President and UCB Pharma, recognises excellent journalistic work raising President Dr Athansios Covanis, Secretary General Sari Tervonen, Dr Athansios Covanis (Greece), Secretary-General Sari and Treasurer Robert Cole awareness of epilepsy, giving a voice to people with epilepsy and Tervonen (Finland) and Treasurer Robert Cole (Australia). Robert on his new appointment. effectively engaging readers, listeners and viewers. Awards are We also take this opportunity to acknowledge the work of the It has been 20 years since an Australian has been elected to made in four categories: Print, Radio, Online, and Television. The a position on the IBE Executive, with Robert Cole following in outgoing executive: President Mike Glynn, Secretary General Megan Howe, the footsteps of the late R M Gourley (founder of the National Carlos Acevedo, and Treasurer Grace Tan. Great strides in a Deputy Editor at Print Category award for 2012 went to Megan Howe for her article, Epilepsy Association of Australia in 1983) who also served as advancing the epilepsy cause internationally have been taken in Australian Doctor, has Getting ahead of Epilepsy. The Epilepsy Report is pleased to IBE Treasurer. the past four years