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 under their leadership. Most notable being been working as a reprint it here. Robert’s commitment to IBE includes serving, in a the European Declaration on Epilepsy; the great work of the health journalist and voluntary capacity, as Chair of the Western Pacific Region PAHO project in Latin America; and the 1st African Regional editor for more than 20 ou’ve no doubt heard Professor Cook, head of involves permanently (2009-2013); Chair, IBE Editor’s Network (2007–present); Congress held in Nairobi in 2012. years in Australia and about the bionic eye neurology at St Vincent’s implanting electrodes on and as Co-Chair 9th Asian & Oceanian Epilepsy Congress However, a cause very close to all our hearts, is SUDEP the UK. Her awards Y and the cochlear implant Hospital, Melbourne and the surface of the brain to held in Manila in 2012. At home, Robert is CEO, The Epilepsy and the Australian epilepsy movement applauds Mike Glynn’s include the 2011 Royal – some of the most famous chair of medicine at the monitor electrical activity 24 Centre SA & NT, while also serving as President of Epilepsy commitment to put this often difficult subject centre stage at College of Pathologists developments in the fast- University of Melbourne. hours a day. A pacemaker- Australia and Chair of the Joint Epilepsy Council of Australia the two International Congresses he presided over. We hope of Australasia media growing world of medical “It prevents them driving, like device implanted under (JECA). The Australian epilepsy community congratulates SUDEP continues to be top of mind under the new presidency. award. This article bionics. stops them from working, the clavicle records the was first published But Professor Mark Cook threatens their safety, costs information and transmits in Australian Doctor, is quietly optimistic that an their life sometimes.” the records, analyses and 10 August 2012. See: Western Pacific even bigger group of patients But imagine if people with real-time ambulatory iEEG www.australiandoctor. – the 15 million people epilepsy could know when a data to a small pager-sized Executive Committee com.au worldwide whose lives are seizure was going to occur. device that the patient carries for 2013-2017 disabled by uncontrolled And what if the drugs to treat with them. It has a series of The Excellence in epilepsy – have reason to the seizure could be delivered coloured lights: blue indicates he newly elected Executive Journalism Award Denise Chapman Frank Gouveia Yuan-fu Tseng Ding Ding hope they could be offered directly to the affected part of a very low risk of seizures, TCommittee for the IBE Western Australia New Zealand Taiwan China winners for 2012 are: Chair Vice Chair Secretary VP Western Pacific (ex offico) new, more effective therapies the brain, exactly when they white indicates a medium risk Pacific Region also officially took office Megan Howe from Japan, Korea, Taiwan, Malaysia, in the not-too-distant future, are needed. Or, even better, and red indicates a very high in Montreal,. epilepsy treatment and care. Australia (Print Category) thanks to developments in what if the seizure could be risk. Dr Ding Ding from China, Western The newly elected committee of Chair, Singapore, Philippines, New Zealand Laura Piper from and Australia. neurobionics. averted completely? “If effective, it would Pacific Regional Vice President, will Denise Chapman, Vice Chair Frank Scotland (Online Category) Currently, of the one in 100 A compact, driven man remove a lot of the disability carry on the work of past VP Dr Shung- Gouveia and Secretary Dr Yuan-fu The aims and purpose of the Regional Kieran Feeney from Executive Committee includes people worldwide who suffer with the knack of explaining from people with seizures – it Lon Lai, who has retired after 8 years Tseng along with Dr Ding is looking Ireland (Radio Category) recurrent seizures throughout exactly what his complex might let them go to work, in the position. Dr Lai has worked forward to building on the work of the facilitating joint activities in the region A team from Finland, their lives, about one-third research could mean to play sport, conceivably even diligently in preparing the way to previous executive, so ably led by Robert and supporting existing members within including Anne cannot be adequately treated patients, Professor Cook drive. It might be that you establish IBE chapters in both Laos and Cole and Dr Lai. the region by providing a forum for the Flinkkilä, Sari Valto, with available medications told the conference that can provide therapies when Vietnam, each presenting with its own The Western Pacific region is a vast exchange of information, expertise and Hilkka Yli-Arvo, Päivi or surgical therapies, the ground-breaking Australian their status changes on the unique set of challenges to improving region that comprises China, Mongolia, experience. Valkama and Anne Melbourne neurologist and research into implantable recording,” Professor Cook Kristo (TV Category) world leader in epilepsy devices is now making that says. Dr Michael Hills 1941-2013 treatment told the recent kind of control over this While the device hasn’t All winning entries can ur good friend and colleague, Dr Mike Hills, passed away suddenly on May 1, 2013. TEDx Wollongong event at unpredictable condition a real proved the answer to all the be viewed at http:// Mike will be long remembered for his commitment to the epilepsy community both in New the University of Wollongong, possibility. Australian trial participants O www.ibe-epilepsy.org/ Zealand and internationally. Mike first served as IBE Secretary General in 1993, and he was to NSW. One of the first implantable – some have had it removed remain on the committee for 12 years, serving two terms as Secretary General and a further term winners-of-the-2012- “A lot of the problem devices to be trialled in and some have gone on to as Vice President. In 1999 he received the IBE/ILAE Ambassador for Epilepsy Award and in 2009 excellence-in-epilepsy- with epilepsy relates to its humans – including 15 have surgery – for young his professional and personal commitment to the epilepsy community was acknowledged with the journalism-award/ unpredictability. We have to Australian patients – is the Tasmanian Jason Dent it has IBE/ILAE Social Accomplishment Award. soak people in medications Seizure Advisory System, been life-changing. Dr Hills was an Honorary Fellow of the Department of Psychology at the University of Waikato, to prevent seizures that which predicts when a seizure In an interview with New Zealand. Research and teaching in the disability area was his passion, with over 100 be occurring for only a is likely to occur. Epilepsy Australia 10 publications and conference papers published in his name. Having epilepsy since the age of 19, few minutes a year,” says Developed by US company months after the device was Mike’s pioneering psychosocial research into epilepsy will be his legacy. NeuroVista, the system implanted, Jason said that

4 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 5 when a red light appeared on put the drugs we have in of years away but Professor difficult to control epilepsy the monitor, he took fast-acting polymers and we implant them Cook says it is entirely to have that control and Epilepsy Management Plan wins Victorian Disability Sector medication. As a result, the – at the moment in animals plausible that we could see independence, to feel they seizures that had previously only – over the surface of the such devices available to treat can contribute and get out Award and sets a standard for Disability dominated his life – occurring brain in the part where the uncontrolled epilepsy within and work and participate in suddenly and without warning seizures come from.” 5-10 years. community life,” she says. “It Care Australia, the national disability –had completely stopped. Eventually, the electrically And if the polymer implants could really open doors.” “I feel more confident in the activated polymers might be do not prove the answer, In a recently published insurance scheme. things that I do from day to able to actually drive drug he says another approach paper on their research into day and I enjoy the fact that I release, he says. “Conceivably, to suppressing seizures drug-infused polymer-based new management plan for people are to be managed and how they want am not having seizures every we could construct polymer – electrical stimulation implants, Professor Cook and Awith disabilities who have epilepsy to be supported after a seizure,” Mr fortnight,” he said. “I feel like I implants, which could not only of the brain is also under fellow researchers stated: or seizures has been developed with the Pfeiffer said. have more control over my life, release the drug but detect the investigation in a project run “The Holy Grail has so far aim of condensing all existing epilepsy The plan has been adopted by Epilepsy: as before the seizure would seizure and use the energy in by the Bionics Institute in eluded researchers in the field, plans into one cohesive, transportable Victorian Department of Human come with no warning and the seizure itself to release collaboration with St Vincent’s however, strong progress is document providing a single point of Services Quality Division into its Know me, stop me doing the things that I the therapy. This would be Hospital Melbourne. being made.” reference for support workers on how to Residential Practice Manual to Support me encourage all disability service Epilepsy Management in the Disability Sector love doing, like my cricket and remarkable.” Rather than predicting So are they truly within sight manage a person’s epilepsy. A resource for better practice timekeeping at the local footy seizures, the implantable of epilepsy’s Holy Grail? The One Person, One Plan Initiative providers to adopt this new plan within games.” Marriage of two stimulator device will monitor “I used that term about being which was formed by the Epilepsy their services. other health Professor Cook says Jason’s worlds the electrical activity of able to predict seizures and Foundation of Victoria in partnership The new Epilepsy Management conditions can be managed implant remains in place The epilepsy research he is the brain via electrodes. If people ridiculed me,” Professor with Melba Support Services, Scope, Plan won the Excellence in Improving in the disability sector providing a better and, hopefully, can stay conducting with the Intelligent abnormal neural activity Cook admits. “We’ve got the Villa Maria, Yooralla and the Victorian Health Award at the Victorian Disability practice guide and resources for both the there forever. “Suddenly this Polymer Research Institute is detected, a therapeutic old system where you ingest Government Department of Human Sector Awards 2013 announced at Zinc, person and his or her family and for the changes everything.” and the Bionics Institute at waveform is then delivered to drugs and they soak the whole Services was designed to meet the Federation Square, Melbourne on 19th disability worker and organisation. In fact, the potential of the University of Melbourne the right part of the brain to brain. Imagine if you could put unique needs of supporting a person June. The project provided practical these devices goes beyond marks a long overdue marriage stop the seizure (see image...) the solution where the problem living with a disability who has epilepsy. Mr Pfeiffer said the One Person, One solutions by examining current simply predicting the onset of of two scientific worlds, say “It might liberate us is. I think that is a bit of a “Out of the shared frustration within Plan Initiative formed the basis of a knowledge and models and developing a seizure. “Conceivably you Professor Cook. altogether of the need to take therapeutic Holy Grail.” the disability sector, we recognised successful submission to DisabilityCare tools to support people with a disability could use devices like these to “I have always been medications to treat epilepsy,” a need for a standard epilepsy Australia, the national disability and their families as well as disability actually control the release of interested in how to join the he suggests. management plan that all disability insurance scheme Practical Design organizations could use as the main Fund, enabling the development of a service providers and staff in the Epilepsy: the impact source of information on a person’s national Epilepsy Management Plan transition to a NDIS and included the: Among people with epilepsy and their family members epilepsy support needs,” said Wayne for people with disabilities, called „„ Review of existing models of self- Pfeiffer, Client Services General Know me, Support me. This includes directed management plans of health 55% 48% 16% 49% 78% 61% 33% Manager at the Epilepsy Foundation of resources to help people with a disability conditions had been injured considered they had full time jobs were living below faced medicine were on multiple reported full Victoria. understand their epilepsy including Easy „„ Review of the level of epilepsy as a result of a had been unfairly even though the the current poverty costs between medicines for control (ie, no seizure, with 64% treated because majority were of line $11 and $300 per epilepsy seizures over 12 “Previous plans were long and often English material, audio files and a DVD knowledge in the disability sector and of those requiring of their epilepsy working age month months) with people living with disability and hospital treatment at some stage in not easy to follow or implement with explaining the plan as well as a better for their injuries their lives different plans to be completed by the practice guide and resources for families their families Findings of survey of 343 participants on the Australian Epilepsy Research Register, 87% of whom were people with epilepsy family and doctor for each service the and support workers. „„ Development of a self-directed epi- and 13% were family members and carers. Source: ‘Out of the Shadows’: Needs, Perceptions and Experiences of People Living with Epilepsy in Australia. person accessed resulting in multiple The Epilepsy Foundation worked in lepsy management plan, tools and pilot Findings from Wave 2 of the Longitudinal Survey, Epilepsy Foundation of Victoria, March 2012. epilepsy management plans for the same partnership with Bendigo Community trial „„ Review of existing models of health drugs,” says Professor Cook. medical sciences and the The new research is finally person. Health Services and Flinders University DIagRaM of a DeVICe (above): arrays condition management in disability To try and male this vision material sciences. It is difficult shining a light at the end of of electrodes surgically implanted “This new plan is a single, double- to pilot a national approach, that services a reality, he approached to understand what is possible a long tunnel for the many on the surface of the brain will sided document, which can be used as researched the best way to support monitor the complex patterns of brain „„ Development of tools, protocols nanobionics pioneer Professor if you have never had exposure people who have unpredictable the basis for all support provided to a people with a disability living with activity. These signals will be sent to and a pilot trial with disability service Gordon Wallace, founder and to what people in this area can and debilitating epileptic a processor (similar to a bionic ear person who has epilepsy. It covers every epilepsy and their families to have a say stimulator) and proceed to detect/ providers director of the University do.” seizures, says Epilepsy aspect of a person’s seizures including in how their epilepsy is managed under predict the epileptic seizure. Once „„ Publication of epilepsy protocols, of Wollongong Intelligent While there are still big Australia chief executive, a seizure is detected, a therapeutic seizure type/s, what happens when the the NDIS. electrical stimulus can be applied to the self-directed epilepsy management plan Polymer Research Institute, hurdles to overcome – the Denise Chapman. person has a seizure, how to recognise Support to disability service providers electrodes in the appropriate area of and tools. and told him he wanted to formation of suitable polymers Those people face constant the brain to suppress the seizure. when the person is having a particular and staff to manage epilepsy in an All the resources: the Disability “put drugs where they work”. for diffusing the drugs, finding anxiety about when a seizure seizure, and the appropriate response individualized funding situation was Image courtesy of Bionics Institute. Sector Guide to Best Practice, the Not having to give the optimal medications and might occur, meaning both for any given type of seizure. It also also explored. The Victorian Department epilepsy management plan, emergency antiepileptics systematically ensuring the implants are safe the loss of independence and outlines the appropriate response for the of Human Services, Sandhurst Centre medication management plans for could avoid the damaging side to use in humans – there is an serious risks to health. person, in the event of an emergency. in Bendigo and Marillac Disability midazolam and rectal diazepam, effects medication has on the air of optimism among those “I think it’s wonderful, it’s “Not only is the plan transportable Services in Caulfield agreed to act as and easy-English Learning about CNS and elsewhere in the in the field. a very exciting development,” across multiple disability organizations trial sites. epilepsy booklet, can be reviewed and body. Human studies of the drug she says. “What promise it but it gives the person with a disability Mr Pfeiffer said this project may downloaded from www.epinet.org.au “So that’s what we do. We infused implants are a couple can hold for people with very a much greater say in how their seizures also inform how the management of

6 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 7 from the library Thank You for Watching: Epilepsy on YouTube

Toba Schwaber Kerson D.S.W., Ph.D. Bryn Mawr College, Bryn Mawr Pennsylvania, USA.

Scarlett Paige Introduction producers to non-professional individuals, also have very I’ve studied depictions of seizures and epilepsy in mass different purposes for using the site (Hand, 2008). Most media for a long time, and throughout, what I and others postings are made by amateurs who wish their experiences to have found is that depictions for the most part continue to be be shared by a potentially limitless audience (Wesch, 2008). insensitive and do little to educate the public about epilepsy In terms of what is possible in mass media, this kind of walking for epilepsy video-sharing is “a transformation of who is saying what to (Baxandale, 2003, 2008; Kerson, Kerson & Kerson, 1999, 2000; Kerson 2007; 2008; 2010, 2012; Moeller, Moeller, Rahey whom” (Strangelove, 2010, p. 9) because the material can go Diagnosed with epilepsy at 19, year was their 3rd time taking part. With each step and knowing how & Sadler, 2010). What I discuss here is the part of this larger from amateurs making and posting the video directly to the and after extensive investigations We met at their hotel as we had to pick many others were taking it with me, study that describes how epilepsy is portrayed on YouTube, audience (Steigler, 2010). People post because they want to determined that surgery was too up our T-shirts and collect our bags for makes me realise that I am not alone and the dominant site for video sharing. I am heartened by the keep viewers’ attention, have viewers bond with them and risky, Scarlett decided to share walk day. Lauren and I both got a purple I am so much stronger than my epilepsy. information that I have gathered. On YouTube, people tell even build social networks by creating videos of affinity her story on an epilepsy facebook shirt to represent that we have epilepsy After the Walk finished there was their own stories rather than have them filtered or made up by (Lange, 2010). They want to deepen connections not just to the page. It was here she met Lauren, and Cathy received a white one to show a question and answer session with 3 producers, writers or directors who are only using portrayals video but to themselves. Very often, uploaders ask viewers to a kindred spirit, from Grayson, she loves, cares and supports someone neurologists. Atlanta, USA, who had undergone to tell their story or market their product be it a film, tv show respond to them (Snickars & Vondereau, 2010). with epilepsy. After checking in we had On Sunday, before Lauren and Cathy epilepsy surgery without success. or newspaper. The title of this article comes from a video made While there are other such sites, YouTube dominates online lunch and caught up on the last year. left for home, we had lunch and said our In 2012, Scarlett journeyed to the by a young woman who thanks the viewer for watching. She video-sharing. Quantcase.com, a website devoted to measuring goodbyes for the year, which is always US to join Lauren and her mother in On Saturday I woke early to a very wants viewers to watch her video, hear her words and share or estimating audience, reports that the audience for YouTube hard. Washington for the National Walk cold walk day. This year the Walk had a and understand her experience. is 17.7 million people per day in the United States of whom for Epilepsy. She returned again this new route along with a new length of 5 I had a few more days in DC at the 50% are women, 57% are between 13 and 34 years, 16% year and shares her experience with kilometres. After a few photos we made wonderful Duo before a quick trip to What is Video-sharing? are over 50 years old, 65% are Caucasian and 50% have no us. our way through the 6,000 strong sea Chicago, which was also lovely. I set off In video-sharing, the video host stores uploaded videos on college education (Quantcase, 2010). Every minute, 24 hours of people with epilepsy, their families, for home on the 28th of April. a server with coding that allows the public or invited guests of video are uploaded (YouTube Fact Sheet, 2010). This year, he 16th of April saw me return to loved ones, friends, work mates, doctors At Los Angeles airport, just before to view the video and, in turn, if they wish, embed the video it is predicted that people will watch a billion videos a day on Tthe United States of America for and the odd seizure dog. We set off to boarding, I heard of the airline staff into other sites, blogs, etc. Video-sharing is one version of the YouTube. my second and the 7th National Walk for investigate the many information booths. calling for help. I looked up and saw newest generation of mass communication that is defined by Epilepsy in Washington DC which was I then went to the Purple Day booth that a female staff member was having digitalization and interactivity. The very nature of broadcast Some downsides to using sites such as held on Saturday 20th. where I was given a badge and book a tonic clonic seizure. I rushed over to media such as film and television means the audience shares YouTube I arrived a few days early to let myself marks with the saying “Anyone With A help as I was the only one who new how a common culture that is fixed and passive, but YouTube is Some of the most positive features of YouTube, its utility adjust to all the time changes and to Brain Can Have a Seizure”. I saw there to handle the situation! Once she had interactive and can be manipulated. and malleability, also mean that messages can be easily do a bit of sight seeing. This year I was a world map and some pins to show regained consciousness she told me she Thus far, YouTube is free and easy to use. It advertises manipulated to alter the intent of the person who created them stayed at the same hostel as last year, where you had come from to participate has epilepsy and thanked me for helping itself as a means for self-expression, vernacular creativity, a (Zittrain, 2008). Anyone who knows how can move parts Duo Housing, and once again it was in the Walk but no Tassie – I soon her. global video-sharing service, and a way to Broadcast Yourself or all of one’s video and, thus, change context and meaning. outstanding, thanks to Mark and his changed that. Epilepsy may be a part of who I am (YouTube, 2010). In addition, it’s a media archive, social The human rights organization Witness has great concerns staff. The Walk was kicked off with the and come on at any time but epilepsy network, broadcast platform, high-volume website and a meta about people’s meddling with others’ postings. Witness Friday morning brought me to meeting American National Anthem and some you will not win. Stay Strong!!! business. partners with human organizations world-wide helping these Using YouTube, anyone with a little technical proficiency up with my friend Lauren, who also has zumba to warm everyone up! After a organizations to use video in their campaigns (Witness, 2010). and standard software can create and upload content on epilepsy. Lauren makes the trip up from 3,2,1 count down we were off and down Witness says that all information such as context, actions and the Internet and thus widely disseminate content (Jenkins, Georgia with her Mother Cathy and this around the Tidal Basin. above: Scarlett and Lauren at the finish line! images have to be contained within the video to protect it from 2006). Contributors, who can be anyone from big-time media such interference (Jenkins, 2009). There is also mounting

8 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 9 concern that videos are being produced commercially but information-seeking comments appeared than information- to a request to tell this huge audience about themselves over four years. The content shows Riley’s home and her made to appear as if they are made by amateurs. In this providing ones, and general negative attitudes were evident in thoughtful, personal ways. Parents post videos of their loving family, parents, older brother and grandparents in practice, called astroturfing, commercial productions look like among commentators. In the second article, 25% of videos children because they want to alert others or demonstrate to everyday, quiet moments, family celebrations and a school grass-roots offerings. concerned people with epilepsy talking about personal their children’s physicians what the children are experiencing. or church play. The music that accompanies the video is Joe experiences, 28% contained an ictal event. About half of These never feel as if the poster was exploiting anyone. Other Cocker’s version of Everybody Hurts (2004), and Martina Control of Your Story or Loss of It the events were deemed accurate; the great majority were videos are self-posted so that the uploaders can say that they McBride’s In My Daughter’s Eyes (2003). Born April 2004. Since those with epilepsy and several other chronic sympathetic. Much of the information in the third article want supports, meaningful relationships and a satisfying life. Everything was perfect. Then Riley suffered her first seizure conditions often worry about control of their bodies and (Kerson, 2012) is summarized below. The least complicated of these postings are videos with no at 6 months of age. The affects of epilepsy extend far beyond how others view them, the idea of controlling one’s story is illustrations with no narrative. Examples are: Absence Seizure. seizures. Developmental delays can include academic especially meaningful. In his seminal work, The Wounded Method and Findings My six year old daughter having an absence seizure (Posted underachievement, social stigma, deficient communicative Storyteller, Frank says: I collected and analyzed 111 videos using the words 5/20/08; Viewed 3/12/13) and Chase 16-month-old myoclonic. skills. The entirely family is affected by epilepsy and its People define themselves in terms of their body’s epilepsy and seizure posted on YouTube and uploading all (Posted 12/06/08, Viewed 3/12/13). Other postings include oral afflictions. Riley’s seizures have caused hospitalization for up varying capacity for control. So long as those capacities are to which there was access that were created between July, or written descriptions. Examples are: Postictal state – How I to 9 days at a time. There are over 20 different seizure types. predictable, control as an action problem does not require 2006 and early 2011. At least two researchers saw all videos look after having an epileptic seizure. (Posted: 8/17/09, viewed Riley has had as many as 220 seizures in one week; Riley has self-conscious monitoring. But disease itself is a loss of and had perfect agreement about categorization. To code the 3/12/13). Voice over: He’s lying in bed. Voice says – Do you bad days; Riley has good days. Each day that passes without a predictability, and it causes further losses: incontinence, information, we use grounded theory techniques including know what happened, Jamie? Do you know you’ve had a cure limits Riley’s quality of life. shortness of breath or memory, tremors and seizures, and all simultaneous involvement in data collection and analysis, seizure? No? Do you know what day it is? Do you know who Our Testimony, Zachary’s Story (Posted 10/6/08, viewed the other “failures” of the sick body. Some ill people adapt creation of categories from the data, the development of I am? Do you know who I am? (faint no). Do you know my 3/12/13). Below are excerpts from a long video narrated by to those contingencies easily; others experience a crisis of middle range theories to explain processes and behavior, and name? What’s my name? Any idea? It starts with J. Zachary’s parents who were asked by their pastor to produce control. Illness is about learning to live with lost control. theoretical sampling to review and refine categories (Bryant Abby’s Seizure. (Posted 5/11/09, viewed 7/2/10). “Let’s this testimony for the grand opening of their church: Renee Frank, 1995, p. 30. & Charmaz, 2010). The clips are divided between men and take video of Abby... We gotta see what’s going on, okay and I had been married for about two years, when she got In this way, uploading on YouTube gives individuals the women; the majority(67%), are Caucasian. Eighteen % of mommy?” “We were getting ready to go to daycare, they pregnant. About 34 weeks in, her blood pressure started opportunity to control what they wish others to see and know the subjects are infants, 25%, children, 9% adolescents, 35%, were different so I decided to take a video.” “She’s kind acting up. . . They did a high tech ultrasound which measures about themselves. Gilda Radner, who unfortunately died adults. Hits range from under 100 (10), to over a million of just straining, there it goes right there” “just thought I’d blood flow between baby and mother, and found that there before video-sharing came into existence, talks a great deal (2) with the great majority being under 100,000. Most are take a video so we can show it to Dr. Z when we go in on was reverse blood flow. The doctor said, “He has got to come about control in her autobiography, It’s Always Something. narrated by a parent, the subject of the video or physicians Wednesday.” “This has been going on for about two minutes out now.” They took me back and performed an emergency Comedy is very controlling – you are making people and/or epilepsy advocates. Almost half were made in a private already” “So we can show the doctor what’s going on with C-section, and he came out 3 pounds and 7 oz; he was unable laugh. It is there in the phrase “making people laugh. You residence, and almost all of the videos are narrated are in you now. There it is again.” to breathe on his own and was having heart failure. . .When feel completely in control when you hear a wave of laughter English. There are several more elaborate explanations that discuss he was about six months old, he started having these spasm coming back at you that you have caused. Probably that’s Only clips that either contain representations of seizures or the duration and/or intensity of a seizure, and/or some seizures. He would fly forward with his palms up above his why people in comedy can be so neurotic and have so many discuss epilepsy directly are included. In relation to epilepsy information about context and history. Several examples head. We got him to see a doctor right away. The neurologist problems. Sometimes we talk about it as a need to be loved, type, I refer to the way in which the narrator refers to the follow. told us he had something called “infantile spasms” or “West but I think with me it was also a need to control. I’ll make the incident or condition. More than half do not name a type. Of My Epilepsy vids2 (Posted 3/6/09, Viewed, 3/12/13). This Syndrome,” which is a kind of infantile epilepsy. And he said decision whether to come out in my underwear or not, and I’ll the 45% that name a type, 24% are called complex partial, posting includes text that was written by Talia, the person there is always some underlying cause, and so he ordered an make the decision whether you see it or not. It’s like standing 14%, myoclonic, 10%, tonic-clonic, 10%, multiple types, with epilepsy, and also a voice-over that was included by the MRI. The MRI showed significant brain damage, and they in front of a whole group of people and having them under and 8%, infantile epilepsy. There are small instances of the man making the video. He gently calls her, “Talia, Talia. You diagnosed him with cerebral palsy.... So the doctor said, that is your spell, having them in your power, and not letting them following: West Syndrome, Lennox Gastaut, absence, temporal feeling better.” “You have to get a bit of sleep now. I think what is causing these seizures, now we have to get the seizures get at you first. The hard part about illness and cancer is that it lobe, generalized, frontal lobe tuberous sclerosis, grand mal, you are.” Following is the text that is inserted into the video: under control. So we went through a process of medication, feels so out of control” (1989, p. 183). partial seizures, and atonic. In addition, two examples are Sometimes seizures occur while I am tired or already asleep. and the seizures completely stopped. . . Having a special needs One of the first problems I tackled was the business of feigned seizures whose purpose is to entertain viewers. I have already had some partial activity going on including child has brought us closer as a couple, closer as a family, being asleep for thirty-six hours during my chemo while the The videos are also categorized according to auspices: wandering and a Tonic Clonic. I am now showing more and has brought us closer to God. We are really amazed that world was going on. How could I make facing that out-of- (1) personal, that is, made by an individual with epilepsy, a Complex Partial Activity. I am unaware of what is happening God can take something that is so devastating and he can give control time more bearable? I had Gene make a videotape of friend or family member (63%), (2) medical, that is created by to me or my surroundings. Afterwards I feel dreamlike, someone purpose. And when he gives you direction, he says me playing tennis on a Sunday. Just me . . .My plan was to professionals in medical institutions (23%), or (3) advocacy, floaty, I can be partially aroused at times. I usually fall asleep “Here’s your direction, do something with this.” And it has play the videotape in my room while I was asleep. . .I was so that is, made by professional advocacy groups (14%). I discuss quickly, sometimes I may have more. Or I may progress into put us in a community of people who can say that they have proud of the idea, and it was another way for me to control the the medical and advocacy uploads in Kerson, 2012. Tonics or Tonic Clonics. These may last an hour or sometimes been there, and that there is this amazing, awesome God that situation” (1989, p. 150). through the entire night. However, most of the time I continue can carry you through it all. There are blessings that come Control and loss of control are paramount issues in Personal Uploads to sleep without further incident. from trials and tribulations that you don’t really know about uploading videos on YouTube. Now, it is difficult to predict Here, I discuss only the personal uploads, 66 postings by Riley’s Journey with epilepsy (Posted 4/11/08, viewed until the storm has passed. And it is only through our light and the effects of YouTube’s being bought by Google (Google buys those who have been diagnosed with epilepsy, their friends 3/12/13). Following in the text that accompanies the series savior Jesus Christ that we can see how great those blessings YouTube, 2006) and seeking sponsorship and advertising, and and relatives. Personal videos discuss the experience of living of still photos and videos of Riley that her family made really are. more powerful forces seeking to institute rules and manage with epilepsy. Postings of infants and toddlers having seizures the site (Snickars & Vonderau, 2010). Even the most personal are by parents who want others to know what to look for, what of postings often have ads subtly written onto the videos like to do about it or simply to share their experience. The posts subtitles in a foreign language film. are brave, direct, articulate and intensely personal. People post using their own names and most frequently make the Recent Studies of Epilepsy on YouTube videos at home. Teens often post in their bedrooms, those most Of three recent studies of epilepsy on YouTube, one inviolable and individual spaces. Uploads combine videos with concludes that misinformation and stigma persist (Lo, Esser photos taken at other times and in other venues. Sometimes, & Gordon, 2010). The top 10 most viewed videos on You they use voiceovers and sometimes, text. Music accompanies Chase Epilepsy isn’t always peaches and cream Tube were analyzed according to emotional impact, less some postings. It is as if those posting were responding

10 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 11 Epilepsy isn’t always peaches and cream (Posted 2/24/11, your partial seizures you have your complex partial seizures, say it is not a problem in the beginning, and then, when they or don’t want to tell people, and I understand that viewpoint. Viewed 3/12/13). Banner: I decided to step out of my comfort you have your tonic seizures, you have your tonic clonic are faced with the reality of a seizure or a couple of seizures Some people don’t respond well, and the questions can get zone and record myself during a 24 EEG. Excerpt from a seizures... I’ve gotten six bumps on my head before from or stuff like that, it becomes a huge problem. Epilepsy is who old, but if you don’t talk about it, who is going to talk about voiceover. Hi everyone. I felt compelled to do another video having a seizure in the bathroom, because you never know I am, it’s a part of me; there is nothing I can do about that... it? They will just listen to the stigma. Exorcism, people keep and I know typically my videos umm are in November for when they’re going to come. You don’t have a little alarm on People define me as “epilepsy.” That word “epilepsy,” they thinking that’s epilepsy, whatever they see on TV, like ER and epilepsy awareness month but today I really wanted to do one you, it just comes whenever it feels like it. You could be the feel like it makes me who I am. And that’s not true, I’m so other shows. It’s not really like that... There are two ways of because I know there’s another side to epilepsy that a lot of smartest person in the world, you could be Einstein, and not much more than an epileptic person... I’m just tired of feeling looking at epilepsy, you can either laugh about it or cry about people don’t realize. You know, I can sit there in front of a know when seizures are going to come, okay?... My friends the way I do. I feel so self-conscious about being an epileptic it, I do a little bit of both, but I laugh about it more because camera and say, “You should do this” or “think positive” or do are always understanding about epilepsy, they are always so person. I feel like now I need to hide it. I need to not tell “Positivity is one of the greatest medications”. I read that on a whatever, but there’s still a lot of struggles and stresses that supportive, and when I told them I might be getting the brain people. I don’t need to wear my medical ID bracelet because fortune cookie somewhere, but it’s so true because if you just people with epilepsy have. And I’m sure that everybody that is surgery. They take out a tiny square, one centimeter by one as soon as people know, they look at you different. Deep down get in one mindset it will just take you down... So basically, on the Epilepsy Foundation website has gone through an eeg, centimeter, of my brain that causes my seizures, and I should inside, they think you are some kind of weirdo or some kind that’s me, that’s my life. If you look at me, nothing’s wrong you know, mri, whatever and that’s exactly what I’m doing not have any more seizures. But they may have to do it a few of freak or something. It has been really hard for me because with me, but sometimes I have epilepsy, don’t be scared... This today. It’s a 24 hour eeg, and I’m not ashamed or purposefully times. But my friend, she was like, “Tazia, when you wake up, all I want to be is what people call “normal.” I just want to is just a little insight, now you’re educated. “Thank you for covering myself up. I just literally wanted to show what most I will be there waiting for you. And I was so happy I almost be accepted for who I am without having problems or being watching”. of us go through. And, you know, I have my pirate scarf here cried... I am so lucky to have a friend like her, and her mom is judged by others. It really hurts me. It hurts me because I feel (she takes off her hat and scarf to reveal the electrodes). It’s so supportive too... Epilepsy can make you feel alone at times, like crap. I feel about this small because people don’t stop Results not pretty, you know, and I’m going out of my comfort zone in it can make you feel sad; it can make you feel upset and angry; being my friends due to my being mean or a bad friend or I YouTube postings regarding epilepsy and/or seizures are doing this and that’s exactly why I’m doing it. So obviously it can make you have major headaches. I’ve had to cancel on said something... Guys don’t stop being my boyfriend because generally created by medical or advocacy organizations or since I had all of that stuff on my head, it’s messy but, you dates because I had seizures. I have had to go to the hospital I cheated or something. It’s only because I have epilepsy and by individual posting personal information. In the personal know, I had to have all of these on my head for 24 hours to for an emergency. It’s not fun, it kind of sucks at times... they had to deal with a seizure now and again. uploads, people post what they want an anonymous audience record my activity. And I have - all these probes and wires or Epilepsy, people don’t know much about it. Me and my And I want to express that if I could choose not to have to see and know about them. Many types of epilepsy are whatever you want to call them are connected to a battery pack mom did fundraising for epilepsy, I think we raised $800 for epilepsy, I would do so. I wish that people would stop acting included in the data set. Messages vary according to the (she opens her shirt to reveal more sensors) that – I can press epilepsy research. There’s only three kids who raised money... as if this were something I chose for myself... Society and purpose; seizures are generally real (not fictionalized) and a button if I feel a certain way – I’ve got these sensors for my I go on epilepsy.com, and they have chat rooms for kids and people make me feel like it’s not ok to be this, to be an are posted to show whoever is watching something about the heart rate and heart beat and obviously this is a 180 difference adults who just want to talk to somebody who understands epileptic person... I feel that every person should be accepted experience and/or to advocate for those with epilepsy. but this is what people who suffer from seizures or epilepsy what they are going through, and they also have stuff for for who they are, not made to feel ashamed and just want to have to go through. And I just wanted to do a video because in parents on there... They tell you about people being depressed, crawl into a hole and hide from the world because they have Conclusions every video I did, I was lookin’ all pretty and happy but that’s I know I’ve been depressed from epilepsy before, and it hasn’t something that they have no control over. I just wanted to talk On YouTube, representations of seizures and epilepsy only not always the case. And that’s ok because that’s what we have always been happy for me, but it hasn’t always been terrible about that because if there is anybody out there who feels like occasionally appear to have the titillating purpose of most to do to get through this and I’m willing to make a video while for me either... Ever since I started using that, I’ve just felt I do, I want to know them to know they are not alone and if depictions in film and on tv. Those posting want the audiences I look ridiculous and upload it on the internet just because I so much better, they have blogs on there you can read... It’s somebody wants to talk about it, you can leave me a comment to know their realities, their experiences with epilepsy. know that other people can relate to that. But it’s nothing to be pretty cool on there. I’m only 14, but my mom – I can see it or message. Personal uploads are generally respectful, forthright, brave and ashamed of and I’m probably even going to my brother’s party in her eyes that she stresses about me all the time. Epilepsy Epilepsy and Me. (Posted 9/9/09, viewed 3/12/13). This poignant. While it is thought that this level of personal posting later just to see how people are going to respond but I’m trying is dangerous, but is not that bad. You can still be a perfectly almost 9 minute video contains embedded photos and a would be very uncomfortable for many people, the educational to do things lately that are outside of my comfort zone so normal teenager. You just have to do things in a different way, voiceover narration. It was made by Jen, a teen with juvenile contribution of these postings is enormous. This article obviously I don’t want to go out but that’s why I think I should. and take your medicine, talk to your doctor a lot and give them myoclonic epilepsy, in her colorful and attractive bedroom. is not meant to push people to post any information about It strengthens me and helps me deal with things. . . updates, and you’ll be fine. Just remember, there is always a She speaks with animation, warmth and a sense of humor. themselves, families members or friends, but it does show the Me and Epilepsy (Posted 1/8/11 viewed 2/9/11). The light at the end of the tunnel, and it’s never going to be that During the video, Jen inserts several short videos of her great benefits of having people talk about themselves and how following voice over material includes parts of a 14 minute bad. It always gets better. self-described “twitching” with one short insert showing her they manage the symptoms of epilepsy. Through YouTube, video whose plain background has the word ‘laugh’ printed in The downs of having epilepsy/seizures (Posted 1/12/11, putting on eye makeup, and photos of herself in the hospital some people may have a way to gain control not of the illness a large, elegant font. viewed 6/9/11) I just basically wanted to follow up with during an EEG. or its symptoms but of what they want an anonymous audience This is my first video ever, and my 5th time trying to make my status – my epilepsy and seizures. My last neurologist Hi, I’m Jen. I’m 16 years old, I’m a sophomore in high to see if they are able to imbed message and context into their an epilepsy video. It has to be perfect. Anyway, my name is appointment, the doctor added – keppra to the dilantin... The school, and I have epilepsy. I’m not the girl from the Blair videos. Overall, postings talk about epilepsy in ways that Tazia, and I was diagnosed with epilepsy at the age of 7, and Keppra make me feel really really drowsy, just dizzy, just Witch Project. I don’t wrap my head around, do projectile should bring greater understanding and financial, emotional I’m 14 now. . . Anyways, epilepsy is not a commonly talked really drugged up. And I don’t like it because I have to take vomiting. I decided to record a video about epilepsy since it and social support for those who have the condition and their about thing, but it is just as common as breast cancer. I think care of my daughter... I’m basically making this video because affects my daily life I guess I could give a more human point friends and relatives and for research and education. Thank most people out there thing epilepsy equals seizure, and I wanted to talk about my life with epilepsy and, you know, the of view than “Dr. so-and-so,” and break it down normally. I you for watching and for reading. seizure equals grand mal seizure, and that’s half true and half struggles that I face on a day-to-day basis. Life with epilepsy couldn’t really find any other videos about what I was going not true. Epilepsy usually equals seizure, and seizure equals for me has been really lonely because I find it running off through to kind of comfort me, I guess. So, this is going to be a lot of things. You have your absence seizures, you have friends and boyfriends and just people in general. People will my shot at it. This is going to be a long video, because I deal References Abby’s seizure. (5/11/09). http://www.YouTube.com/watch?v=Jr- with this everyday... I have juvenile myoclonic epilepsy, which KbjUovVU. basically means I twitch. “(TXT on the screen). On a bad Absence Seizure. (5/20/08). http://www.YouTube.com/ day I have over 2,000 myoclonic seizures.” I have good days watch?v=YAJ8A1lwl. Baxandale, S. (2003) Epilepsy at the movies: Possession to presidential and bad days... I have been in and out of the hospital. I had a assassination. Lancet Neurology. 2: 764-770. grand mal on Dec. 8, 2007. I missed a date for that. “Hey, I Baxandale, S. (2008). The representation of epilepsy in popular music. can’t go on a date tonight, I’m in an ambulance.” Cool... I take Epilepsy & Behavior, 12:165-69. Bryant, A. & Charmaz, K. (2010). The Sage handbook of grounded theory. these little pills, called Keppra, twice a day, every day. Every Thousand Oaks, CA: Sage. morning, I wake up and take a pill. It’s part of my life... I can Burgess, J. & Green, J. (2009). YouTube: Online video and participatory do everything normal kids can do, I horseback ride, I swim, I culture. Malden, MA: Policy Press. Postictal state – How Epilepsy and Me. eat and burp a lot..[burps for the video]... I’m very pro talking Chase 16 month old myoclonic.(11/6/08). http://www.YouTube.com/watch? v=VC6HJPZr. I look after having an about epilepsy... A lot of people are ashamed to be epileptic Continued on p21 epileptic seizure. 12 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 13 Ode to Nonsense: Celebrating the life and art of Edward Lear An Appreciative Review of Slingsby Theatre’s “Ode to Nonsense” by Jim Chambliss PhD Candidate (Creative Arts & Medicine), MA (Visual Arts), JD (Law) eldom is it discussed that epilepsy exploding stars. And, there he hangs, than ninety journals, in which he claims Smight have had a positive influence limp and death-like in the spotlight until to have written “about everything and in the creative writing and visual art of he can resume his place in the normal everybody.” He burnt an estimated 60 Edward Lear (12 May 1812–29 January world. Not that the world was normal journals from the first half or his life 1888) and other artists of his day, like for Edward Lear. He was the grand in 1840. He subsequently wrote thirty Lewis Carroll (1832–1898), Odilon master of the nonsensical as well as a volumes of journals from 1858–1887, Redon (1840–1916) and Vincent van writer, traveler, and artist. Theory has it covering the second part of his life. Gogh (1853–1890). However, for the that epilepsy was pivotal to his creative Within those journals he documented first time, the Adelaide based theatre impetus. Certainly it was bold and right his seizures, recording an X beside company Slingsby and the State Opera for Andy Packer’s Slingsby team to give a number as an apparent subjective of South Australia presented a lavishly it dramatic focus in a production that account of the severity or duration of a entertaining opera about the life and art is simply not like anything else. Ode to seizure. of Edward Lear from 26 April to 4 May Nonsense is an opera for the family.” In order to genuinely portray the 2013. Creative productions such as “Ode visual aspects of how focal epilepsy “Ode to Nonsense,” the creation to Nonsense” can help bring about a can trigger fascinating imaginings Mr. of Slingsby’s director Andy Packer, positive change in the understanding Packer incorporated what he learned librettist Jane Goldney and composer and acceptance of how society views from interviews with Jim Chambliss Quincy Grant shares with the utmost epilepsy and the people who have and the visual art he gathered from charm, insight and humanity, the it. Andy Packer was cautious and around the world of more than 100 life story of Edward Lear – the most respectful in the endeavor to ensure contemporary artists living with celebrated and admired of all “nonsense” that the account of how Edward Lear epilepsy, in order to genuinely portray writers. Along with his writings, Edward lived with epilepsy would “not be used the visual aspects of how focal epilepsy Lear is known for his artworks of birds, gratuitously.” He interviewed Mark can trigger fascinating imaginings. The nature and fictional characters. In 1846 Francis of the Epilepsy Centre, South works of these artists are exhibited in Lear published A Book of Nonsense, a Australia, who shared, along with his the Creative Sparks Website at www. volume of limericks that went through personal insights as an epilepsy service artandepilepsy.com. Insightful review three editions and helped popularise the provider, a collection of films depicting of Lear’s journals, artworks and creative form. In 1865 The History of the Seven seizures with the artistic director, actors writing, indicate that he most likely had Families of the Lake Pipple-Popple was and the choreographer who envisioned focal epilepsy, with a combination of published. His most famous piece of and portrayed Edward Lear having a partial seizures, secondary generalised nonsense writing and drawings The Owl seizure in the opera. Mr. Francis – who seizures (simultaneous malfunction of and the Pussycat was published in 1867. was present on the opening night – most of the brain, without conscious In a review in The Australian, Graham described their portrayal of a seizure memory of the event), unique epileptic Strahle wrote that the opera about and the hallucinations (or intrinsic visual auras and interictal behavioral Edward Lear provides “a touching perceptions) that accompanied it, as a changes, such as hypergraphia, account of what happens to the human “dance” that was “almost beautiful.” stickiness of behavior, and preoccupation mind when pure nonsense takes over, He elaborated, “They worked hard to with fictional or other-worldly imagery. Ode to Nonsense ploughs new ground.” authentically get the movement right Such indications are best represented by “Ode to Nonsense” is the world’s first from the torso to the fingertips.” Mr. Lear’s “nonsense” writing and art. opera or theatre production to present Francis was also present, to answer Mr. Packer was satisfied, and how epilepsy could enhance creativity in questions about epilepsy, following subsequently affirmed, that audiences the written and visual expressions of a several matinee performances for school had no concern about the inclusion of famous artist. students. a seizure in the production, nor the After seeing the theatrical opera, Andy Packer conducted 12 years of contention that epilepsy influenced the Samela Harris, from the Barefoot extensive research of the biographies, creative writing and art of Lear. He said Review, wrote: writings, journals and artworks of that several individuals with epilepsy “It may be the grandest grand mal Edward Lear in order to understand how who were in the audiences were “very ever staged. Edward Lear convulses to present his experiences with epilepsy pleased with the way epilepsy was on the stage before being raised high in an admirably empathetic, respectful represented.” in the air amid a shatter and scatter of and authentic way. Lear wrote more It is only in the last decade that several

14 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 15 research studies by Georges Ghacibeh and associates in the USA and Jim Chambliss, A long way to go: Mark Cook and associates in Australia provided evidenced- Epilepsy care in China based proof that focal epilepsy could at times enhance creative potential. The Chambliss/Cook study, along with the production of the Sparks of Creativity: Art and Epilepsy Website and Art Exhibition, was a joint venture between the University of Melbourne, St. Vincent’s Health and the Epilepsy Foundation of Report by Ding Ding and Schichu Li, China Association Against Epilepsy CAAE Victoria. To enable the study Photo: father and daughter, rural China of ‘if and how’ epilepsy could enhance creativity, Epilepsy hina, the second largest economy in number of activities to eliminate social long waiting times and traffic problems. Australia and most every Cthe world, remains a low-and-middle- discrimination and prejudice against Another main reason is that they worry Australian epilepsy service income country (LAMIC) in World Bank people with epilepsy, to safeguard their about recurrent seizures and medical costs. organisation, along with terms due to its huge population. Of the lawful rights, and to increase their The key problem is not the gap between 1.3 billion people living in China, about 9 organizations in Europe and the knowledge on epilepsy. provinces, but the gap between urban and million have epilepsy, of which 6 million In July 2007, the self-help “Seahorse rural areas. For people with epilepsy living USA assisted in the recruitment have active epilepsy. In addition, a further Club” of people with epilepsy was founded in urban areas, accessing efficient AEDs of more than 100 artists with Images courtesy of Slingsby Theatre 400,000 new cases are diagnosed each in Shanghai, under the Patients Self-help is their most important requirement, while epilepsy. year. Unfortunately, 65% of these patients Cluster of CAAE. The Club held group for those living in rural areas, accurate According to the research Nicholas Lester (Edward Lear), Johanna Allen (Gussie), Adam Goodburn (Giorgio) receive no treatment; while others are meetings for people with epilepsy, invited diagnosis and cheap AEDs are their of Chambliss/Cook Lear’s “nonsense” inadequately treated due to deficiencies in experts in epileptology to deliver lectures basic needs. Thus, the goal of epilepsy hallucinations. An example of this is the and that epilepsy sometimes led to writings and drawings reflect many health-care resources and delivery. management is to ensure that people with turkey playing marriage celebrant to an increased artistic expression. influences of the illusions and complex Epilepsy brings a heavy burden to Of the 1.3 billion epilepsy remain as free from seizures as owl and a pussycat as they dance by the Yet, very few people followed up on hallucinations, often consistent with people with epilepsy and their families people living in China, possible with efficient but cheap AEDs light of the moon. his reflection that the electrical mischief epilepsy – or the use of hallucinogenic economically, psychologically and, also, about 9 million have and with treatment side effects minimized. Many in society, during the life of of epilepsy could enhance creativity. substances – but rarely included in socially. To achieve this goal, training of primary Edward Lear, viewed seizures as a Through electrical stimulation of parts epilepsy the art of people who do not have Since the establishment of China care physicians to improve diagnosis and sign of demon possession, witchcraft of the brain, medical scientists over the Association Against Epilepsy (CAAE) epilepsy, migraine auras, bipolar treatment skills is a first priority. or a curse. These attitudes increased following decades, confirmed Hughlings in 2005, the scientific and psycho-social on epilepsy, and provided free medical Epilepsy has been in a culturally disorder and a few other neurological the isolation, depression and stigma Jackson’s theories and documented treatment of people with epilepsy in consultations. challenging condition throughout Chinese and/or psychological conditions. Lear’s experienced by both people with the evidence that direct electrical China has been improving rapidly and the Since late 2007, the Club has conducted history. People with epilepsy receive extraordinary attention to detail and epilepsy and their families. Lear stimulation of the brain cortex led to disease has been receiving more and more a series of “art and epilepsy” activities, unfair treatment or face discrimination, elaboration in his realistic paintings, suffered depression, which he referred to various forced memories, hallucinations, attention both from the government and the such as art competitions and handcraft and often experience severe mental stress of birds and landscapes, are consistent public. making courses, both for people with due to stigma. Most are reluctant to open as “the morbids.” Toward the latter part physical reactions, and behaviors, with hypergraphia, which is associated As part of the Global Campaign epilepsy and for their carers, in order to themselves to education, employment his life that ended in 1888, at the age depending on which section of the brain with changes in between seizures Against Epilepsy, and under the auspices improve their capabilities. and marriage, mostly due to a lack of of 76, the medical profession began to was stimulated. (interictal) for some people with of the World Health Organization and In 2010, the Club established the Self- relevant epilepsy knowledge and the recognize the impact of partial seizures Lear’s self-description in verse, How epilepsy. Hypergraphia is an intense the Ministry of Health of China, a help Art Studio for people with epilepsy, negative impacts of traditional customs and auras arising from focal epilepsy. Pleasant to know Mr. Lear, ends with preoccupation with written and/or demonstration project was implemented with the support of IBE’s Promising or superstitious ideas. Therefore, public Partial seizures – depending upon the this stanza, a reference to his own visual expression producing remarkable from 2000 to 2004 in rural China. Strategies Program. The artworks were education on epilepsy should be as place of origin of the sudden surge of mortality: An intervention trial was undertaken in exhibited and published as calendars, book volume, emotional charge and/or important as the care of people with electrical activity and the manner in He reads but he cannot speak Spanish, 8 rural counties in 6 provinces, covering covers, greeting cards, and albums. epilepsy themselves. It requires us to make attention to detail. which it spreads – can influence how He cannot abide ginger-beer; a population of 3 million people. This However, there are still challenges to strategic plans in terms of subgroups of the Both the writing and art of Edward a person feels, behaves and/or thinks. Ere the days of his pilgrimage vanish, project was expanded to 135 counties be faced in the next decade in China in population, for example, children, students, Lear reveal noticeable traits and Between 1870 and 1880 John Hughlings How pleasant to know Mr. Lear! in 18 provinces at the end of 2012, respect of patient care. teachers, farmers, doctors, social workers, characteristics that can help distinguish Jackson, often referred to as the father covering 74.95 million people in rural the The diagnosis and treatment skills etc. This is a tough task that needs our epilepsy from the other conditions It is admirable and appreciated that population. A total of 135,764 people with of primary care physicians are heavily continuous and long-term efforts. of modern neurology, labeled partial listed above. Some of the more Slingsby and the State Opera of South epilepsy were screened under this project; lacking, and people with epilepsy Finally, to quote a very favour Chinese auras and/or seizures as the “dreamy common traits and characteristics of Australia are now – 125 years after his 74,862 were treated with Phenobarbital themselves do not have other resources to proverb: “a journey of a thousand miles state,” “intellectual aura,” and “double the type of intrinsic imagery generated death – helping people better know and 8,020 with Valproic acid, free of access epilepsy knowledge. Some people begins with single step”. We believe that consciousness.” He theorized that partial by the sparks of epilepsy, that are Edward Lear, his experiences with charge. After treatment, about 25% of with epilepsy have poor adherence to epilepsy care in China will improve with epilepsy caused predictable behaviors frequently represented in his work, epilepsy and how the electrical mischief people with epilepsy were seizure-free standardized treatment with anti-epileptic the contributions and efforts of all related that were linked to the location of are the distortions of shapes, human of epilepsy can spark creative images and the condition of a further 45% had drugs (AEDs), and monitor plasma domestic and international organizations, scarred brain tissue. He recognised improved. This is also a good experience concentration and adverse events regularly. institutions and warm-hearted people. figures, combinations of human forms and stories that have entertained people that symptoms of partial seizures were for LAMICs. Most people with epilepsy think that it People with epilepsy should and could with animals or plants, and complex for a century and beyond. uniquely recurrent among individuals Meanwhile the CAAE organized a is inconvenient to see doctors because of enjoy their life in China!

16 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 17 alertness and behaviour (Weber et al., neither the MAD nor KD can be or not it is an efficacious and sustainable 2009) and this is before medications considered a ‘natural treatment’. They therapy. were reduced. Weber also found that have side effects like any medication. Even though results for MAD and Why consider the children were more awake during the Further, the KD requires a high level of the KD are good, very few patients day and slept better at night. dietary supervision, commitment and achieve complete long term seizure Independent from its effect on seizure resources, the MAD less so, but still a freedom. Treatment is also ongoing and Modified Atkins Diet frequency and severity, MAD may also challenge. Although a varied diet can be requires a sustained commitment. An be beneficial in patients with clinical provided within the requirements, both additional drawback of dietary therapy obesity or those desiring weight loss are still very limiting on lifestyle. For in both adults and children is the lack for the treatment of (Smith et al.,2011). Some adult patients this reason dietary therapy should only of dietician expertise and perceived on MAD experienced adverse side be considered for drug resistant epilepsy, complicated nature of using the diet by effects of elevated LDL cholesterol that is, after two appropriate medications the average neurologist without KD and refractory epilepsy levels. However, Cervenka et al.(2012) have failed and only undertaken with MAD experience (Kossoff & Doward, found that on carnitine supplements, strict medical supervision (Cross, 2010). 2008). Despite increasing evidence of Yvette McMurtrie combined with dietary counselling Response (or seizure reduction) efficacy and an increasing awareness Client Services Coordinator to avoid saturated fat and increase to the diet at three months predicted amongst families, there is still a lack of Epilepsy Queensland, Brisbane, Australia consumption of unsaturated fat, the the response to the diet at 12 months choice for either the family or the health levels of LDL and total cholesterol for most patients (Smith et al.,2011). professional owing to a lack of resources he majority of people with seizure reduction. This demonstrates nutrients in the Ketogenic and Modified returned to normal. Therefore a three month trial of MAD required. Waiting lists for MAD or KD Tepilepsy become seizure free that the MAD is remarkably similar to Atkins Diets are outlined in figure 1. It is essential to note though that may be sufficient to determine whether services are long. with antiepileptic medications, but the KD in effectiveness. The MAD is Research does indicate that the diet approximately 20-30% will have also generally thought to be easier to is most effective in Doose, Dravet refractory epilepsy, for which seizures stick to and have fewer side effects than and West syndrome (Oguni et al., References persist despite accurate diagnosis and 2002; Caraballo et al.,2005; Kossoff Barzegar M., Irandoust P., Ebrahimi Kessler S., Neal E., Camfield C., Kossoff E. Neal EG, Chaffe H, Schwartz RHm Lawson the KD (Cervenka et al., 2012). Mameghani M. (2010) A Modified Atkins Diet (2011) Dietary Therapies for Epilepsy. Epilepsy & MS, Edwards N, Fitzsimmons G, Whitney A, carefully monitored treatment (Berg et The MAD was created at the John et al., 2008). In these syndromes diet for Intractable Childhood Epilepsy. Iran J Child Behaviour. Vol 22. pp. 17–22. Cross JH. Growth of children in classical and al., 2001). The Ketogenic Diet (KD) was Hopkins hospital in an attempt to create therapy could possibly be considered Neurology. Vol 4 (3). pp. 15 – 20. Kim Y., Vaidya V., Khusainov T., Kim H., medium-chain triglyceride ketogenic diet. Kim S., Lee E., Lee Y., Lee J., Kang H. (2011) originally developed in the USA in the earlier in the management rather than Berg A., Shinnar S., Levy S., Testa F., Pediatrics, 2008, 122;e334-40 a more palatable and less restrictive Smith-Rapaport S., Beckerman B. (2001) Early Various Indications for a Modified Atkins Diet Payne N., Cross H., Sander J., Sisodiya S. (2011) early 1920s and has recently become dietary treatment. The MAD induces later. Kossoff et al., (2010) found that development of intractable epilepsy in children: a in Intractable Childhood Epilepsy. Brain & The Ketogenic and Related Diets in Adolescents increasingly accepted internationally. It ketosis without fluid, energy or protein children with Doose (Myoclonic Astatic prospective study. Neurology. Vol 56 pp1445-1452. Development. Vol 10 pp 1-6 and Adults – A Review. Epilepsia. Vol 52 (11). pp. Bergqvist AGC, Schall JI, Stallings VA, Zemel Kossoff E., Borsage J., Comi A. (2010) A Pilot is considered an important alternative to 1941 – 1948. restriction (Kossoff et al., 2010). The Epilepsy) had an almost 100% responder BS. (2008) Progressive bone mineral content loss Study of the Modified Atkins Diet for Sturge- Porta N., Vallee L., Boutry E., Fontaine M., drug therapy for children with medically MAD can be initiated in an out-patient rate with more that 90% reduction in in children with intractable epilepsy treated with Weber Syndrome. Epilepsy Research. Vol 92. pp. Dessein A., Joriot S., Cuisset J., Cuvellier J., intractable seizures (Freeman et al., seizures. There have not, however, the ketogenic diet. American Journal of Clinical 240 – 243. Auvin S. (2009) Comparison of Seizure Reduction setting and is possibly suitable for both Nutrition Vol 88;1678-84. Kossoff E., Bosarge J., Miranda M., Wiemer- and Serum Fatty Acid Levels After Receiving the 2007). The KD, however, remains children and adults. been many studies in adults with other Bodenant M., Moreau C., Sejourne C., Auvin Kruel A., Kang H., Kim H. (2010) Will Seizure Ketogenic and Modified Atkins Diet. Seizure. Vol restrictive and prescriptive, requiring So how do the diets differ? Essentially syndromes and thus the diet may be just S., Delval A., Cuisset J. (2008) Interest of the Control Improve by Switching from the Modified 18. pp. 359 - 364. careful monitoring by a dietician. Use ketogenic diet in refractory status epilepticus in Atkins Diet to the Traditional Ketogenic Diet? Sirven J., Whedon B., Caplan D., Liporace J., both the KD and MAD are high fat as effective in these. adults Rev Neurol (Paris). Vol 164 (2) pp148-56. Epilepsia. Vol 51 (12). pp. 2496 – 2499. Glosser D., O’Dwyer J., Sperling M. (1999) The in adults has been attempted but in view diets with very little energy coming Patients on the MAD experience fewer Carrette E., Vonck K., De Herdt V., Dewaele Kossoff E., Dorward J. (2008) The Modified Ketogenic Diet for Intractable Epilepsy in Adults: of its restrictions has been extremely serious side effects than on the KD. I., Raedt R., Goossens L., Van Zandijcke M., Atkins Diet. Epilepsia. Vol 49 (8). pp. 37 – 41. Preliminary Results. Epilepsia. Vol 40 (12). pp. from carbohydrate. On the MAD, Kossoff EK, Hedderick E, Turner Z, Freeman difficult and has been noted that even Wadman W., Thadani V., Boon P. (2008) A Pilot 1721 – 1726. daily carbohydrates are limited initially Most of the side effects were manageable Trial with Modified Atkins’ Diet in Adult Patients JM. (2008) A case-control evaluation of the Smith M., Politzer N., MacGarvie D., when a benefit is seen, adults are not to 10g/ day in children with planned and patients were more likely to be with Refractory Epilepsy. Clinical Neurology and ketogenic diet versus ACTH for new onset McAndrews M., Del Campo M. (2011) Efficacy infantile spasms. Epilepsia. 49(9)1504-09. able to continue with the KD in the able to tolerate being on the diet for a Neurosurgery. Vol 110. pp. 797 – 803. and Tolerability of the Modified Atkins Diet increase after one month to 15g, then Cervenka M., Terao N., Bosarge J., Henry B., Kossoff E., Laux L., Blackford R., Morrison P., in Adults with Pharmacoresistant Epilepsy: A immediate term (Cross, 2010). 20-30 g as tolerated based on seizure longer period. The MAD is generally Klees A., Morrison P., Kossoff E. (2012) E-mail Pyzik P., Hamdy R., Turner Z., Nordli D. (2008) Prospective Observational Study. Epilepsia. Vol The Modified Atkins Diet (MAD) control. Adults are started on 15 g/day considered less restrictive on lifestyle Management of the Modified Atkins Diet for When Do Seizures Usually Improve with the 52 (4). pp. 775 – 780. has been used to treat intractable Adults with Epilepsy is Feasible and Effective. Ketogenic Diet? Epilepsia. Vol 49 (2). pp. 329 – Vining E. P. G. (2008) Long-term Health and can be increased to 20-30g/day (Kossoff et al, 2010). There are no Epilepsia. Vol 53(4) pp. 1 – 5. 333. Consequences of Epilepsy Diet Treatments. or refractory epilepsy since 2003 after one month. A high fat intake is studies to date, however, that examine Cross J. H. (2010) Dietary Therapies – An Old Kossoff E., McGrogan J., Bluml R., Pillas Epilepsia. Vol 49 (8). pp. 27 – 29. (Kossoff et al., 2008) and the results encouraged. Unlike the KD, however, the long term side effects of the MAD. Idea With a New Lease of Life. Seizure. Vol 19. D., Rubenstein J., Vining E. (2006) A Modified Weber S., Molgaard C., Taudorf K., Uldall are promising. An average of 56% of pp. 671 – 674. Atkins Diet is Effective for the Treatment of P. (2009) Modified Atkins Diet to Children and fasting or food weighing is not required. Similar to the KD, families and adults Cross J. H., Neal E. G. (2010) Efficacy of Intractable Pediatric Epilepsy. Epilepsia. Vol 47 Adolescents with Medical Intractable Epilepsy. patients experienced greater than 50% Calories and fluids are also not restricted alike on MAD report not only seizure Dietary Treatments for Epilepsy. Journal of (2). pp. 421 – 424. Seizure. Vol 18. pp. 237 – 240. seizure reduction and an average of 16% Human Nutrition and Dietetics. Vol 23. pp. 113 Kossoff E., Turner Z., Bluml R., Pyzik P., Wheless J. (2004) Nonpharmacologic on MAD the way they are on KD. The reduction as a beneficial side effect of – 119. VIning E. (2007) A Randomized, Crossover Treatment of the Catastrophic Epilepsies of of patients experienced greater than 90% ratios of energy coming from different the diet but also improved concentration, Dutton S., Escayg A. (2008) Genetic Influences Comparison of Daily Carbohydrate Limits Using Childhood. Epilepsia. Vol 45 (5). pp. 17 – 22. on Ketogenic Diet Efficacy. Epilepsia. Vol 49 (8). the Modified Atkins Diet. Epilepsy & Behaviour. Wheless J. (2008) History of the Ketogenic Figure 1. Diet compositions: ratio, grams of fat, protein and carbohydrate. (Epilepsia © ILAE) pp. 67 - 69. Vol 10. pp. 432 – 436. Diet. Epilepsia. Vol 49 (8). pp. 3 – 5. Hartman A., Vining E. (2007) Clinical Aspects Miranda M., Mortensen M., Povlsen J., Nielsen of the Ketogenic Diet. Epilepsia. Vol 48 (1). pp. H., Beniczky S. (2011) Danish Study of a Modified Typical Western Traditional Modified Atkins 31 – 42. Atkins Diet for Medically Intractable Epilepsy in Jung D, Kang H, Kim H. (2008) Long-term Children: Can We Achieve the Same Results as Diet Ketogenic Diet Diet outcome of the ketogenic diet for childhood With the Classical Ketogenic Diet? Seizure. Vol intractable epilepsy due to focal malformation of 20. pp. 151 – 155. Fat cortical development. Pediatrics, Vol 122:330-3. Neal EG, Chaffe H, Schwartz RH, Lawson MS, Fat Fat Kang H., Lee H., You S., Kang D., Ko T., Edwards N, Fitzsimmons G, Whitney A, Cross Protein Protein Protein Kim H. (2007) Use of a Modified Atkins Diet in JH.( 2008)The Ketogenic diet for the treatment of Intractable Childhood Epilepsy. Epilepsia. Vol 48 childhood epilepsy: a randomized controlled trial. Carbohydrate Carbohydrate Carbohydrate (1). pp. 182 – 186. Lancet Neurology. 7(6):500-6 Jun

18 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 19 however, many people develop epilepsy, consistent with an Continued from p12. effect of a mutation in a single gene with a strong effect on risk Epilepsy and me. (9/0/09, viewed 6/22/11). Retrieved from: http://www. in the family. YouTube.com/watch?v=Pa1wWCz. Epilepsy and genetics: Studies of these rare families have been very informative for Epilepsy Foundation. (2011). Retrieved from http://www. epilepsyfoundation.ning.com/group/talkaboutit. identifying genes that cause epilepsy. Epilepsy isn’t always peaches and cream. Posted 2/24/11, Viewed 3/12/13). Retrieved from:http://youtube.com//watch?v=Wb9YM1KIjZk things you want to know I am pregnant and I have epilepsy. Is my Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago, IL: The University of Chicago Press. Genetics Commission, International League Against Epilepsy child going to have seizures, too? Google buys YouTube for $1.65 Billion (10/10/06). Retrieved from http:// Certain epilepsy types do seem to run in families. However, www.msnbc,msn.com/id/15196982/n5/business-us_business/ for most people with epilepsy, the amount of increased risk Hand, M. (2008). Making digital cultures: Access, Interactivity and authenticity. Aldershot, UK: Ashgate Publishers. What is genetics? appears to be modest. Figure 2 - DNA, genetic code and Jenkins, H. (2006). Convergence culture: Where old and new media Genetics is the study of genes and inheritance. It studies how The order (or collide. NY: New York University Press. making of a humann protein The risk of epilepsy in the close relatives (parents, offspring, parents pass on to their children different characteristics or “sequence”) of these Jenkins, H. (2009). What happened before video. In Burgess, J. & Green, and brothers and sisters) of people with epilepsy is about traits. bases (GCT, GAT, J. (Eds.). YouTube: Online video and participatory culture (pp. 109-124). two to four times higher than that of people in the general Malden, MA: Policy Press. Every person inherits half of their genes from the mother TTT, etc.) makes up population, depending on the type of epilepsy. The risk is Kerson, J. F., Kerson, T.S., & Kerson, L.A. (1999). The depiction of and the other half from the father. Still, everyone is unique our genetic code, which seizures in film. Epilepsia, 40, 1163-67. higher in the relatives of a person with generalized epilepsy in a variety of traits, such as height, eye color, health or provides the information Kerson, T.S. (2010). Epilepsy and Media. In Pinikahana, J. & Walker, C. than in the relatives of a person with focal epilepsy. Studies Social epileptology: Understanding the social aspects of epilepsy (pp. 231- disease. Therefore, children are in many ways similar but not needed to make proteins, suggest that, except in some unusual cases, the chance is less 263). New York: Nova Science Publishers. identical to their parents or their siblings. Most of our traits are large molecules that are Kerson, T.S. (2012). Epilepsy postings on YouTube: Exercising individuals’ than 1 in 10 that a child of a person with epilepsy will also determined by a combination of genes and environment (e.g., important for proper and organizations’ right to appear. Social Work in Health Care 51: 927-943. develop epilepsy. Kerson T. S, Kerson J. F., & Kerson L. A. (2000). She’ll have a seizure body weight is caused by genetics and lifestyle). structure and function of maybe: Then we can watch. Social Work in Health Care 30, 95-110. a human body. Proteins are made up of amino acids, and each Kerson, T.S. & Kerson, L.A. (2007). Implacable images: Why epileptiform How can I find out about the risk of epilepsy events continue to be featured in film and television Epileptic Disorders. What is the basis of my genetic make up? 3-base unit of DNA determines the specific amino acid that for myself or my children? 8(2),1-11 Human cells contain structures called chromosomes (see will be included in the protein. A gene is a unit containing a Kerson, T.S. & L.A. Kerson (2008). Truly enthralling: Epileptiform events Genetic testing is available for several known epilepsy Figure 1A). Chromosomes are thread-like structures that blueprint for making a specific protein. There are about 20,000 in film and on television - Why they persist and what we can do about them. genes. Genetic counseling is an important part of the testing Social Work in Health Care 47(3), 320-337. package our genetic information. The genes are lined up on the genes packed in each parental chromosome set (23 pairs of process. Talk to your neurologist or an epilepsy specialist Lange, P. G. (2010). Videos of Affinity on YouTube. In P. Snickars, & P. chromosomes, like beads on a string. chromosomes). Vonderau, P. (Eds.). The YouTube Reader (pp. 70-88). Stockholm, Sweden: about a referral to a genetic counselor. You will meet with a National Library of Sweden. Figure 1A - Human genetic makeup specially trained health care professional who will review in Lewis having a seizure. Posted 5/19/08, cited 6/6/10). http://www.YouTube. What is a genetic mutation? detail your medical and family history. com/watch?v=dQJXVmk9nsk A gene mutation is a permanent change in the DNA sequence Lo, A.S., Esser, M.J., & Gordon, K. E. (2010).YouTube: A gauge of public Cell He or she may recommend additional laboratory and/ of a gene that leads to problems with the gene’s protein product. perception and awareness surrounding epilepsy. Epilepsy & Behavior 17,541- or genetic testing and will calculate the risk of developing 545. ➞ Chromosomes ➞ ➞ There are many different kinds of mutations, ranging from epilepsy within your family. McBride, M. (2003). In my daughter’s eyes. Martina. RCA Nashville. a change in a single base (A, T, C, or G) or a few bases (Fig. Me and epilepsy (Posted 1/8/11, viewed 2/19/11). Retrieved from: http://www.YouTube.com/watch?v=9BENuR-vqpQ Human Chromosome DNA 3A), to much larger changes involving extra or missing pieces How can I participate in a research study on Moeller, A. D., Moeller, J.J., Rahey, S. R., & Sadler, M. (2010). Depictions of genetic material that could include several genes or even a of seizure first aid management in medical television dramas. Abstract. epilepsy? Each person has 23 pairs of chromosomes. One member whole chromosome (Fig. 3B). Neurology 74:2: A107. Genes play an important role in epilepsy. Still, in the More than One billion users will view online video in 2013 (5/27/08). of each pair comes from the mother and the other from Gene mutations occur in two ways: they can be inherited majority of patients, the exact genetic mechanisms or causes Allied Business Intelligence. Retrieved from http://www.alliedworld.com. the father. In Figure 1A, pink bars represent chromosomes from a parent (hereditary mutations) or occur for the first time Myoclonic? Apparently . . . (Posted 11/6/08). http://www.YouTube.com/ have not been identified. Participation in research studies on that are inherited from the mother and black bars represent in a person (de novo mutations). watch?v=C8QAg-wdl-s&feature=related. genetic mechanisms of epilepsy is critical for improving our My Epilepsy Vids2 (Posted 3/6/09, Viewed 7/2/10). http://www.YouTube. chromosomes inherited from the father. One of the 23 Figure 3. Examples of genetic changes that can predispose to disease knowledge and ability to diagnose disease, predict who will or com/watch?v=flXjV1nS70&feature=related chromosome pairs is special because it determines sex – males Our Testimony, Zachary’s Story (birth-19 months). (Posted 10/6/08, such as epilepsy will not develop epilepsy, and develop better treatments. have an X and a Y chromosome, and females have two X viewed 6/8/10). Retrieved from: http://www.YouTube.com/watch?v=L5JU7- There are many studies in epilepsy genetics or epilepsy 8VeEI&feature=related chromosomes. In Figure 1B, pink and blue bars represent sex mechanisms conducted locally, nationally, and internationally. Postictal state – how I look after having an epileptic seizure. Posted chromosomes X and Y. Males inherit an X chromosome from 8/17/09, Viewed 3/12/13). Retrieved from: http://www.YouTube.com/ their mother and a Y chromosome from their father. Females This article is provided as a public educational service by the Genetics watch?v=RIQPW1U1InE Quantcase.com (2010). Retrieved from www.quantcase.com/YouTube.com inherit an X chromosome from their mother and another X Commission of the International League Against Epilepsy, 2013 http://www.ilae.org/Visitors/Centre/documents/ Radner, G. (1989). It’s always something. NY: Simon and Schuster. Riley’s Journey with epilepsy (4/11/2008, cited 6/6/2010). Retrieved from: chromosome from their father. GeneticsPamphlet-2013.pdf http://www.YouTube.com/watch?v=bcn021oiREI Figure 1B Snickars, P. & Vonderau, P. (Eds.). (2010). The YouTube Reader. The Epilepsy Genetics Group Stockholm, Sweden: National Library of Sweden. Steigler, B. (2010). The carnival of the new screen. In Snickars, P. & Researchers from The Epilepsy Research Centre, Melbourne, Vonderau, P. (Eds.). (pp. 40-59). The YouTube Reader. Stockholm, Sweden: together with collaborators at the Women’s & Children’s National Library of Sweden. Is epilepsy a genetic disorder? YouTube. (2010). Retrieved from: http://www.YouTube.com. Hospital and University of South Australia in Adelaide, and at Strangelove, M. (2010). Watching YouTube: extraordinary videos by Genetics is believed to play a role in most forms of epilepsy. X Y X Y X X X X the Walter and Eliza Hall Institute in Parkville, are international ordinary people. Toronto; University of Toronto Press. However, perhaps surprisingly, most people with epilepsy do YouTube Fact Sheet. (2010).Retrieved from: http://frameconcepts.com/ leaders in the genetics of epilepsy. By 2011, 12000 people not have any affected relatives. youtube-fact-sheet. have participated in or signed up for their research studies. Witness. (2010).Retrieved from http://www/witness.org. The most important component of chromosomes is DNA Current scientific evidence suggests that the role of genetics To learn more about the work of the Epilepsy Genetics Wong, V.S.S., Stevenson, M., & Selwa, L. (2013). The presentation of (deoxyribonucleic acid), a long molecule shaped like a twisted in epilepsy is complex – many genes with a small or modest seizures and epilepsy in YouTube videos. Epilepsy & Behavior Available Group and how you may participate visit: ladder, or double-helix (Fig. 1A). effect on risk are likely involved – so that it is difficult to online 27 February 2013. http://www.brain.org.au/epilepsyresearch/research_ The DNA molecule is made up of substances (“bases”) called predict which people are at high risk. In some unusual families, G, C, T, and A. programs/genetics/index.htm

20 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 21 CONSUMER UPDATE Personally Controlled Electronic Health Record (PCEHR) face2face ne of the features of epilepsy is that personal notes about your health and Oit is often unpredictable. Just when emergency contacts. Fundraising is the life blood of all charities, large or small, and a person is feeling confident that they When a healthcare provider has can resume normal activities might just access they can see information about fundraisers are those exceptional people that work hard to be the time when a seizure happens. For your medical history, any allergies to raise the money, commitment and enthusiasm that’s needed to many people that unpredictability leads medicines, adverse reactions and a list allow the organisation to deliver its aims and goals. to social isolation and sometimes being of what medicines you are currently In this issue we meet Epilepsy Queensland’s inspiring housebound. The Personally Controlled taking. You might want to include your Fundraising & PR Manager, Leigh Gilbert. Electronic Health Record may well be a wishes about organ and tissue donation. My Child’s eHealth Mobile App huge benefit to people with epilepsy and This helps them make better decisions their families, opening the way to having about your health and treatment advice. The my child’s eHealth record app is more confidence and mobility. The PCEHR is not a full medical record for Australian healthcare consumers It has been nearly 5 years since I partner. The media jumped onto Here’s scenario to explain how it could but more a summary of important with children under the age of commenced working with Epilepsy it as did many of our clients and help. Imagine that you and your partner information. The only time a healthcare 14 years. It allows parents and Queensland. After 19 years working supporters. My previous experience have decided to take that long-awaited professional can have access without authorised representatives to access with the Returned & Services League with the Poppy Appeal certainly knowledge of epilepsy. I have learnt so trip around Australia. You set off after permission is in a medical emergency the child’s eHealth record add and of Australia (Queensland Branch), helped to know how to start getting much more about the effects epilepsy months of preparation. Your epilepsy is such as following a car accident. view information about the child’s in fundraising roles that included people involved and raise some money has on people and families through controlled, you have your prescriptions There are teething problems with the development. After 14 years of age, coordinating the annual Poppy Appeal, along the way. There was no time my new friends and also our Facebook with you and you both feel great. Weeks PCEHR and these are being worked the child’s records may be accessed it was time to move on. A difficult to get any merchandise made so it pages where I have ‘met’ some lovely later, in the middle of nowhere, you through. Already there are some 127,000 via the eHealth website. decision at the time as the RSL, staff became very therapeutic following my “ and the wonderful veterans I had the chemo treatment to hand make purple people throughout the world including become ill. It might not even be due to people who have registered. In the This app is not a replacement for the inspirational young Cassidy Megan epilepsy but you both want to consult a case of our scenario above we can see privilege of working for and with, had ribbons which sold out. That first year your current child health records. who founded Purple Day and her health professional. This entails a long the immediate advantages especially always played such a huge part in my we raised just $7,000 but last year family. drive to a small remote community as it will be accessible from mobile life. It is a cause still very close to my surpassed our target and hit a record of Pre-Requisites: Although the team at Epilepsy health centre. You are desperate for help devices. For seriously ill people who ➡➡ a child eHealth record. You heart as my 93 year old father was a $110,000! Queensland is small, it is a terrific but the first thing the staff want to know access several healthcare professionals need to register your child at ehealth. former WWII Prisoner of War. Dad I cannot be happier that Purple team to be a part of, as my colleagues is your medical history. You aren’t up to in the course of their care we know gov.au. Do this from a computer (you and I shared a unique relationship of Day is now Australia wide and that are all very passionate about our answering and your partner is looking that ensuring accurate and consistent cannot register from a mobile phone) working closely together (he was State each Epilepsy Australia state based organisation and helping people with vague. There’s going to be valuable time information can be daunting. Having Vice President) over the years and we organisation is also enjoying the epilepsy. It’s a great place to work! lost in phoning your regular GP. access to one’s own list of prescribed ➡➡ a myGov account to access have many friends (both young and benefits of both fund and awareness If I could have a wish it would medicines in itself is a huge advantage. the Government’s online services. old) in common to this day. raising. I really enjoy my involvement What could help? be that ‘purple’ is the new ‘pink’! The PCEHR just might be the answer to Use your myGov username and However, from day one at Epilepsy with the other state organizations Enter the PCEHR. This is a secure, password to access the child’s Although I consider myself fortunate many different problems. Queensland I realised that this was and sharing ideas and merchandise. electronic record of your medical eHealth record. to have survived the first 5 years If you wish to find out more you can going to be a completely different It often still brings tears to my eyes history, stored and shared in a network without any reoccurrence from It’s 3am and your GP contactis closed. your local Medicare office or fundraising role and one that I would when I hear how Purple Day has made of connected systems. You are in control If you have previously registered the dreaded breast cancer, I find it telephone the eHealth helpline on 1800 come to love as much as the RSL – just a different to someone with epilepsy of the informationWe’re in a PCEHR open.as well to access your Government online frustrating to see how much money

723 471. For those wishing to register go services through australia.gov.au in different ways. After only being life – being either a school student who as being in control of who can access and support the many breast cancer If you have an urgent health concern and don’t know what to do, call the after hours GP tohelpline www.ehealth.gov.au – for free health information and assistance you will need to convert your account there for one month I was diagnosed proudly stands in front of their class it. A health professional can only have charities receive. It’s the smaller from a registered nurse, or medical advice from a GP if you need it. The after hours GP helpline is open when your GP may not be – at nights, to a myGov account and accept the with breast cancer on Christmas and talks of their epilepsy for the first access if you give permission. You can Note: this article is an adaptation of an organizations such as those supporting on weekends and on public holidays – 365 days a year. If you don’t know what to do, the articleafter hours that GP appeared helpline will in givethe youChronic the reassurance Illness myGov terms and conditions. Eve, and couldn’t have asked for time or those who join in Epilepsy also add your own information such as people with epilepsy that desperately and practical advice you need. Alliance newsletter in Feb 2013. more support and understanding Queensland’s Purple Procession “ You can do this by visiting my.gov. than I received from my CEO Helen through Southbank to watch the city need the funds and awareness. I believe that Purple Day will make a eople who require after hours au and logging in using your existing Whitehead and the wonderful team skyline turn purple. australia.gov.au username and difference, and in time give people medical advice, who cannot access intended for people with life-threatening I worked with. I knew then that the During my time at Epilepsy P password. with epilepsy a voice that will be heard their usual GP and are not sure what conditions. People with such conditions decision to leave the RSL was the Queensland I have enjoyed getting to right one – being a firm believer in know our wonderful volunteers and and I hope to be there a long time to they should do, can now speak to a GP should dial ‘000’ and/or attend an The mobile app is available for everything happens for a reason. supporters through community and come, shouting it out too! over Athe joint telephone,initiative of the Australian when Governmentnecessary. and state and territoryemergency governments. department without delay. Android and Apple smartphones, The after hours GP helpline is also available through the Queensland Government’s 13 HEALTH service and the Victorian Government’s NURSE-ON-CALL service. The after hours GP helpline is The after hours GP helpline and can be downloaded from Google Whilst still undergoing treatment, I corporate fundraising events. Many of All information in this publication is correct as at April 2012. accessible during the after hours period is available nationally by calling Play and the Apple App Store. heard about Purple Day for Epilepsy these volunteers and supporters have DHA1159_MDr_Pstr_420x297.indd 1 from 6pm to 8am Monday to Friday, healthdirect Australia on 1800 022 222.17/04/12 5:02 PM which commenced the year prior in epilepsy or have a family member with 6pm Friday to 8am Saturday, from 12 For people living in Tasmania, access Ref: http://www.ehealth.gov.au/ Canada. It was only 3 weeks away the condition. This makes my role internet/ehealth/publishing.nsf/ noon Saturday to 8am Monday, and all to after hours GP telephone advice is from 26 March, but we decided to of raising both funds and awareness Content/mobile day on public holidays. available through GP Assist by calling still join the campaign and proudly of epilepsy so much more personal The after hours GP helpline is not 1300 780 011. became the first official Australian for me, as I had very limited prior

22 THE EPILEPSY REPORT JULY 2013 THE EPILEPSY REPORT JULY 2013 23 Celebrating Purple Day 2013

24 THE EPILEPSY REPORT JULY 2013