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Issue No. 2, 2011 

Josh Gordon 

Reaching for the stars! 

Is 3-D TV a seizure risk? 

Ingrid Scheffer honoured 

Epilepsy Without Words 

Winning photos! 

Meet 

Pauline Brockett 

Face2Face 

Japan’s brave response 

Latest SUDEP Book launched! 

Rosey Panelli 

International Ambassador 

for Epilepsy 2011

WELCOME 

Welcome to the latest edition of The Epilepsy Report. 

Epilepsy Australia congratulates two Australian women who 

recently received international accolades for their individual work 

in epilepsy: Dr Ingrid Scheffer on being awarded the prestigious 

L’Oréal-UNESCO Women in Science Award for her groundbreaking 

research into epilepsy over 20 years; and Dr Rosey 

Panelli on her Ambassador for Epilepsy Award for her work 

serving the Australian epilepsy community over 16 years, including 

raising community awareness of epilepsy-related risks and death. 

Their dedication and commitment is inspiring. 

Also inspiring are Josh Gordon, the Oultram and Meers families, 

and Linc Kelly and his cycling team, as they, each in their own way, 

strive to overcome the challenges of epilepsy and raise awareness 

of epilepsy within their communities. 

On the international scene, we learn of the European 

Declaration on Epilepsy, of the PAHO Strategic Plan for Epilepsy, 

and how Japan’s epilepsy organisations bravely responded to the 

natural disasters that decimated northern Japan. 

SUDEP was the topic of the Presidential Symposium, and 

the theme “Epilepsy Destroys Lives”, ran throughout the 29th 

International Epilepsy Congress, Rome. With SUDEP taking 

centre-stage, we felt as if we had finally climbed that mountain. 

For the many who have worked tirelessly on raising awareness 

of SUDEP over the past 16 years, to witness the room filled to 

capacity was indeed satisfying – as was the successful launch 

of our latest publication, Sudden Unexpected Death in Epilepsy: 

continuing the global conversation with over 2000 copies freely 

distributed to delegates from all over the world. This book is 

available at www.sudepglobalconversation.com 

Editor 

Denise Chapman 

Contributing Editors 

Robert Cole, Dr Robert Mittan 

Dr Frank Vajda, 

Dr Christine Walker 

Contributors 

Dr Michelle Bellon, 

Nenia Travou, 

Alinka Thimm, 

Photography 

Dreamstime.com, 

iSkate Productions 

Print Pegasus Print Group 

The Epilepsy Report is published 

by Epilepsy Australia Ltd 

818 Burke Road 

Camberwell VIC 3124 Australia 

Tel: 02 9674 9966 

epilepsy@epilepsyaustralia.net 

www.epilepsyaustralia.net 

cover: Dr Rosemary Panelli 

Views expressed and information 

included herein do not necessarily 

reflect official policies of Epilepsy 

Australia. Articles covering 

medical aspects are not intended 

to replace competent medical, or 

other health professional advice. 

All content is copyright and may 

not be reproduced without prior 

permission. Contributions are 

welcome. The Editor reserves the 

right to edit content for reasons of 

space or clarity. 

Epilepsy Australia Affiliates: 

Epilepsy ACT 

Epilepsy Queensland Inc 

Epilepsy Association of SA/NT 

Epilepsy Association of Tasmania 

Epilepsy Foundation of Victoria 

Epilepsy Association of WA 

National Epilepsy Helpline 

1300 852 853 

CONTENTS 

PLUS 

3 

7 

11 

14 

Australian women honoured 3 

Psychosocial effects of psychogenic non-epileptic 

seizures (PNES) 4 

Is 3-D TV a seizure risk? 7 

SUDEP: continuing the conversation launch 9 

Linc Kelly & the Ride4Epilepsy 10 

Izla’s Purple Crusade 11 

Happy Endings – The Oultram Family 12 

Women’s Epilepsy Network 13 

Josh Gordon – Reaching for the stars 14 

Winners ‘Epilepsy Without Words’ Competition 16 

International declarations on epilepsy 18 

9th AOEC, Manila, Philippines 19 

Japan’s brave response 20 

Consumer updates 21 

From the library 22 

Face2Face with Pauline Brockett 23 

Australian women honoured! 

Dr Rosey Panelli 

At the 29th International 

Epilepsy Congress in Rome, 

the International Bureau for Epilepsy 

(IBE) and the International League 

Against Epilepsy (ILAE) presented 

Rosemary (Rosey) Panelli PhD, with an 

Ambassador for Epilepsy Award. 

Presented every 2 years, and with 

a maximum of 12 Awards presented 

at any one time, the Award is given 

to individuals in recognition of 

outstanding personal contributions 

to activities advancing the cause of 

epilepsy that have either been performed 

at an international level or have an 

international impact or significance. The 

Award is given for the lifetime of the 

recipient and the name of each recipient 

is added to the Ambassadors’ Hall of 

Fame maintained by IBE and ILAE. 

The 2011 nomination for Dr Panelli 

was submitted by Mr Mike Glynn, 

President of the International Bureau 

for Epilepsy, and acknowledged Dr 

Panelli’s contribution over 16 years to 

the Australian epilepsy community. 

During this time she has championed 

Australian paediatric neurologist, 

Professor Ingrid Scheffer, is 

one of five international scientists 

to win the prestigious L’Oréal- 

UNESCO Women in Science Award 

for her ground-breaking research into 

epilepsy. 

Professor Scheffer has been awarded 

the title of Laureate for the Asia- 

Pacific region and is only the third 

Australian to receive the award. 

Each year, five outstanding women 

the inclusion of peer support workers 

in epilepsy care teams, especially first 

seizure clinics and surgery programs, 

while her research demonstrated the 

model’s potential to enhance care. Rosey 

has persistently worked to improve 

community understanding of epilepsy 

-related risks and death, through the 

biennial Melbourne epilepsy memorial 

service and the publications of Sudden 

Unexpected Death in Epilepsy: a global 

conversation (2005, 2011) where Rosey 

was a key member of the editorial team. 

PROFESSOR INGRID SCHEFFER 

scientists globally are honoured by this 

international prize for the contributions 

they have made through their research, 

the strength of their commitment and 

their impact on society. 

Professor Scheffer holds a chair 

at the University of Melbourne, is 

a senior principal research fellow 

at Florey Neurosciences Institutes 

and is a paediatric neurologist and 

epileptologist at Austin Health and the 

Royal Children’s Hospital. 

Devoting the last 20 years to clinical 

research focused on the genetics and 

different types of epilepsies, and on 

novel antiepileptic therapies, Professor 

Scheffer has identified many new 

forms of epilepsy and, together with 

molecular collaborators, identified the 

first epilepsy gene, and 13 of the 23 

genes currently known. 

Her expertise in defining epilepsy 

Dr Panelli receiving her award in Rome from 

Dr Solomon Moshé, President, ILAE and Mr Mike Glynn, President, IBE 

On receiving her award, Rosey said, 

“It is an honour to receive this award, 

and I am proud to be an ambassador for 

epilepsy. However, nothing has been 

achieved without the support of others. 

“It has been my privilege to work 

alongside people with epilepsy and 

their families, who encouraged my 

work and taught me so much about 

living with epilepsy. I have also been 

lucky to work with some very dedicated 

colleagues. This award also honours the 

commitment of all these people.” 

syndromes has led to her leadership 

role as Chair of the Commission for 

Classification of the Epilepsies by the 

International League Against Epilepsy. 

While she has received significant 

recognition in the past, her latest award 

is considered exceptional. 

“This is a true honour,” Prof Scheffer 

said. “I am thrilled to be recognised 

for my work in epilepsy as a clinician 

and scientist. Women in science face 

additional challenges juggling a career 

and family but if they are passionate 

about science, life can be incredibly 

rewarding. Of course I could not have 

done this without the contributions of 

my patients and their families, my many 

collaborators worldwide and my research 

team.” 

Epilepsy Australia congratulates 

Professor Scheffer on this prestigious 

recognition of her lifelong work. 

2 THE EPILEPSY REPORT DECEMBER 2011 THE EPILEPSY REPORT DECEMBER 2011 3

Alinka Thimm 

Dr Michelle Bellon 

The psychosocial effects of 

psychogenic non-epileptic 

seizures (PNES) 

Alinka Thimm & Dr Michelle Bellon 

Disability and Community Inclusion, School of Medicine, 

Flinders University 

What are Psychogenic Nonepileptic 

Seizures? 

A recent research study conducted 

by Flinders University explores the 

experience of a disability which is 

both hidden and lacks physiological 

‘evidence’; a condition which is not 

understood by health professionals, 

and results in individuals feeling 

confused and isolated. Psychogenic 

non-epileptic seizures (PNES) (also 

called pseudoseizures) are events 

resembling epileptic seizures, which 

are not associated with ictal electrical 

discharges in the brain but by 

psychological processes. 

PNES may be triggered by anxiety, 

psychological tension and heightened 

defence against intense emotions. In 

some cases PNES may be a result 

of psychological trauma, previous 

psychiatric history, physical and sexual 

abuse or posttraumatic stress disorder 

(Fiszman, Alves-Leon, Nunes, Dandrea, 

& Figueira, 2004). 

Health professionals often overlook 

PNES due to the common misconception 

that they are “fake” (Benbadis, 2005) 

or are categorized as a “non-disease” 

(i.e. not epilepsy) (Bodde, et al., 2009). 

However, this is a very real condition, 

with considerable psychosocial 

implications. People diagnosed with 

PNES feel anger, shame, helplessness, 

and experience suicidal ideation 

(thinking about suicide with some 

intent but without actually making 

plans to commit suicide) (Thompson, 

Isaac, Rowse, Tooth, & Reuber, 2009). 

Stigma is often attached with this label, 

fuelled by poor understanding and 

little education and support following 

diagnosis (Benbadis, 2010). 

One complicating factor is that an 

individual may experience both PNES 

and epileptic seizures. 15% of people 

with diagnosed PNES also have epilepsy 

(Benbadis, 2010), and it is estimated 

that 10 to 50% of individuals with 

“intractable seizures” (seizures not 

adequately controlled by AEDs) have 

either lone PNES or a combination of 

epileptic seizures and PNES (LaFrance, 

et al., 2006). Co-morbidity can cause 

significant diagnostic and management 

issues, with health professionals often 

unable to accurately identify the cause 

of seizures, and thereby communicate 

and manage them appropriately. The 

current study aimed to further explore 

the psychosocial effects of PNES and 

their implications for the development 

of appropriate multidisciplinary support 

and management strategies. 

Research Study 

Four participants fulfilling selection 

criteria were recruited through the 

Epilepsy Association of SA and NT 1 . 

Data was collected through medical 

records and documentation, interviews, 

and completion of the Washington 

Psychosocial Seizure inventory (WPSI) 

(Dodrill, et al., 1980) by participants 

with PNES, their significant others and 

Epilepsy Counsellors. 

Semi-structured interviews were 

conducted with participants, their 

nominated significant other and Epilepsy 

Counsellor to gather information on 

the participant’s experience of PNES, 

including their: 

experience of seizures, 

diagnosis, 

living situation, 

social, recreational and vocational 

activities, and 

interventions and support received. 

Interviews were recorded, transcribed 

and a thematic analysis conducted. 

1 Ethical approval for this study was granted 

by Flinders University’s Social and Behavioural 

Research Ethics Committee. 

Table 1. Participant Profiles (*pseudonyms have been used to maintain confidentiality) 

Participant Information Chelsea* Jason* Julia* Eric* 

Age 23 23 33 40 

Diagnosis PNES PNES PNES PNES, Epilepsy 

Age at diagnosis of PNES 22 21 32 39 

Time from onset of seizures 

to diagnosis of PNES 

11 months 5 years 3 years 11 months 

Current seizures - - - PNES, Epilepsy 

Medications - - - PHT, SV, DIA, 

LEV 

Employment status Employed Unemployed Employed Unemployed 

Relationship status Relationship Relationship Married Single 

Transport License L Plates License No License 

It should be noted that Chelsea, Julia and Jason were no longer experiencing PNES at the 

time of data collection, and were no longer taking anti-epileptic drugs (AED’s). It was evident 

throughout interviews conducted with participants that the psychosocial implications of their 

PNES changed dramatically according to seizure frequency and the intake of AED’s. 

Psychosocial Effects of PNES 

Impact of misdiagnosis 

Chelsea, Jason and Julia were initially 

misdiagnosed with epilepsy, and took 

AED’s until their diagnosis of PNES 

(mean of 2.64 years later). They felt 

medical professionals were continually 

increasing their medication doses, 

rather than seeking other management 

approaches. 

Julia: “they were just upping my drugs 

and changing my drugs and giving me 

more drugs.. And at the end of the day, 

the medication was probably making me 

more sick than anything else.” 

Jason: “Like when I asked for help and 

that.. he was oh yea try these pills.. yea 

try these ones.. have these ones.. here 

have these different ones.. try both of 

them at once!.. didn’t try anything but 

medication. Like they didn’t class it as 

anything else (but epilepsy).” 

There was a feeling of helplessness 

among participants; not being able to 

find answers and feeling out of control. 

This has been noted in previous studies 

in which participants felt overpowered 

by their PNES and remained passive and 

helpless (Thompson, et al., 2009). 

Participants also experienced severe 

side effects which they believed were 

associated with the AED’s, including 

depression, weight gain, aggression, 

drowsiness, effects on memory and 

concentration, and suicide attempts. 

Chelsea and Julia both attempted suicide 

more than once, and Jason has often 

spoken of it. According to Kaufman 

and Struck (2010), individuals with 

PNES have an increased risk for suicide/ 

suicide ideation compared with the 

general population. No studies have been 

identified which explore the rate and 

cause of suicide among this population 

and possible connections with AED 

intake. 

Receiving a diagnosis of PNES 

The diagnosis of PNES can be a 

double-edged sword, with participants 

experiencing enormous relief, but also 

anger and frustration relating to their 

misdiagnosis and associated side effects 

of AEDs. Julia and Eric reported a sense 

of abandonment from neurologists who 

gave them the diagnosis. Other studies 

report similar findings, where participants 

felt the shift from the diagnosis of 

epilepsy to PNES was accompanied by 

a transfer of responsibility from health 

professional to themselves (Karterud, 

Knizek, & Nakken, 2010). 

Julia: “he (neurologist) just told me 

that it was in my head… and... that it is 

probably stress and I need to go talk to 

someone about it.” 

Eric: “they said that I had 

pseudoseizures and they can’t do nothing 

for them.” 

None of the participants in this study 

felt they received adequate information 

regarding PNES following the diagnosis; 

receiving only limited verbal information 

and no written information. There has 

been little research on what information 

is conveyed to individuals with PNES 

and how this influences the way they 

perceive their diagnosis. However, the 

issue of communicating the diagnosis 

of PNES has attracted considerable 

interest (Harden, 2001; Shen, Bowman, 

& Markand, 1990; Thompson, Osorio, 

& Hunter, 2005). Farias, Thieman, and 

Alsaadi (2003) found that, in most cases, 

a detailed explanation of the PNES 

diagnosis to the individual reduced the 

frequency of subsequent non-epileptic 

seizures. This was seen in the cases of 

Chelsea, Jason and Julia, who all stopped 

experiencing seizures since receiving 

a change of diagnosis from epilepsy to 

PNES. 

Social experiences 

The social lives of participants were 

severely impacted by their experience 

of PNES, due to high seizure frequency 

and negative side effects of AEDs. Julia 

withdrew from her social circle, Chelsea 

and Jason felt abandoned by friends, and 

Eric felt people avoided him because 

of his seizures. Chelsea and Julia also 

avoided social situations in fear of not 

knowing when they were going to have 

a seizure, and felt friends didn’t want to 

go out with them because of this. This is 

in consensus with research conducted by 

Carton, Thompson and Duncan (2003), 

in which individuals with PNES reported 

social isolation and increased anxiety 

when engaging in everyday activities. 

Participants from this study also 

reported difficulty describing their 

diagnosis of PNES to others, and often 

felt their explanation was received with 

scepticism. This may reflect both their 

limited understanding of this diagnosis 

and the lack of education in the wider 

community. The sense that the legitimacy 

of their seizures and their psychological 

wellbeing was being scrutinized made 

participants feel socially uncomfortable. 

Julia’s experience of PNES has 

severely impacted her ability to parent 

her 3 young children, aged 7, 11 and 

13. When diagnosed with epilepsy and 

taking AEDs, Julia barely had the energy 

to provide adequate care for them. The 

impact of her PNES on her children was 

significant; they often witnessed her 

seizures and were required to call the 

ambulance on several occasions. She 

also struggled to provide for her family 

financially. She received no parenting 

support or psychological support for 

her children. The issue of parenting 

was not touched on by any of the 

literature concerning PNES, but this was 

highlighted as an area of major concern in 

the case of Julia. 


Employment & education 

All participants lost either paid 

employment or volunteer work due 

to their seizures. However, following 

cessation of seizures, Chelsea and 

Julia both regained employment. Jason 

and Eric both receive the disability 

support pension as their main source 

of income. Eric still experiences high 

seizure frequency and is not actively 

seeking employment. The literature 

similarly suggests that seizure cessation 

is a significant predictor of return 

to employment (Mayor, Howlett, 

Grünewald, & Reuber, 2010). 

Jason also discontinued his chef 

apprenticeship due to his high frequency 

of seizures (when misdiagnosed with 

epilepsy) and Chelsea, who was looking 

to further her studies, did not do so until 

she had her seizures under control. 

All participants were unable to 

drive during times when they were 

experiencing high seizure frequency, 

which also limited employment and 

social opportunities. This has had 

particular negative implications for 

Jason, who does not have easy access 

to public transport. He is currently 

studying for his driver’s license so 

he can pursue further employment 

opportunities. 

Conclusion 

The following factors were considered 

influential in the management of 

PNES and improving quality of life of 

participants in this study: 

Receiving an accurate diagnosis of 

PNES and being withdrawn from AEDs 

Understanding the diagnosis of 

PNES and possible triggers 

Ability to access and/or accept 

psychological support 

Presence of family and friends who 

understand PNES and recognize it as a 

legitimate condition requiring treatment 

and support 

According to this study, the most 

positive and influential factor was 

receiving an accurate diagnosis of 

PNES. Individuals with PNES need 

to be assured that their condition 

is legitimate, and need to feel 

understood. This is crucial not only 

for the management of seizures, but 

for the preservation of a positive selfperception. 

The delay between seizure onset and 

PNES diagnosis needs to be minimized, 

followed by effective education and 

support to assist individuals and their 

families gain a greater understanding 

of PNES and manage their condition. 

Evidence suggests this increases 

confidence, social involvement and 

quality of life for this population. 

References 

Benbadis, S. (2010). Psychogenic Nonepileptic 

Seizures. Retrieved 16th June, 2010: http:// 

emedicine.medscape.com/article/1184694overview 

Benbadis, S. R. (2005). The problem of 

psychogenic symptoms: is the psychiatric 

community in denial? Epilepsy & Behavior, 6, 

9-14. 

Bodde, N. M. G., Brooks, J. L., Baker, G. 

A., Boon, P. A. J. M., Hendriksen, J. G. M., & 

Aldenkamp, A. P. (2009). Psychogenic nonepileptic 

seizures--Diagnostic issues: A critical 

review. Clinical Neurology and Neurosurgery, 

111(1), 1-9. 

Dodrill, C. B., Batzel, L. W., Queisser, H. R., 

& Temkin, N. R. (1980). An Objective Method 

for the Assessment of Psychological and Social 

Problems Among Epileptics. Epilepsia, 21(2), 

123-135. 

Fiszman, A., Alves-Leon, S. V., Nunes, R. 

G., Dandrea, I., & Figueira, I. (2004). Traumatic 

events and posttraumatic stress disorder in 

patients with psychogenic nonepileptic seizures: 

a critical review. Epilepsy & Behavior, 5(6), 818- 

825. 

Karterud, H. N., Knizek, B. L., & Nakken, K. 

O. (2010). Changing the diagnosis from epilepsy 

to PNES: Patients’ experiences and understanding 

of their new diagnosis. Seizure, 19(1), 40-46. 

Kaufman, K. R., & Struck, P. J. (2010). 

Psychogenic nonepileptic seizures and suicidal 

behavior on a video/EEG telemetry unit: The 

need for psychiatric assessment and screening for 

suicide risk. Epilepsy & Behavior, 19(4), 656-659. 

LaFrance Jr, W. C., Alper, K., Babcock, D., 

Barry, J. J., Benbadis, S., Caplan, R., et al. (2006). 

Nonepileptic seizures treatment workshop 

summary. Epilepsy & Behavior, 8(3), 451-461. 

Mayor, R., Howlett, S., Grünewald, R., & 

Reuber, M. (2010). Long-term outcome of brief 

augmented psychodynamic interpersonal therapy 

for psychogenic nonepileptic seizures: Seizure 

control and health care utilization. Epilepsia, 

51(7), 1169-1176. 

Thompson, R., Isaac, C. L., Rowse, G., Tooth, 

C. L., & Reuber, M. (2009). What is it like to 

receive a diagnosis of nonepileptic seizures? 

Epilepsy & Behavior, 14(3), 508-515. 

Epilepsy and the 

Workplace: A guide for 

workers and employers 

This guide aims to provide an easy to 

read introduction to the legal issues 

relating to epilepsy and employment. 

It includes information for workers with 

epilepsy and employers on their rights 

and responsibilities in the workplace. 

It also explains the legal options 

available for people with epilepsy who 

feel they have been unfairly treated in 

employment matters. 

The guide focuses on two main 

areas of the law workplace and 

anti-discrimination law. It then briefly 

discusses the emerging field of human 

rights law and the rights relevant to the 

workplace. In most of these areas the 

laws discussed apply throughout all of 

Australia. However, state and territory 

laws often operate concurrently and 

these may create additional legal rights 

and responsibilities. Also these different 

areas of law often overlap and interact 

with each other. 

While this guide focuses on legal rights 

and remedies, this is not to suggest 

these are the only paths available to 

workers and employers dealing with 

epilepsy in the workplace. However, 

an understanding of legal rights and 

responsibilities encourages a more 

informed and fair workplace. 

This guide has been prepared under 

the supervision of Jacinta Cummins 

and Cesira Costello of the Epilepsy 

Association of the ACT, an affiliate of 

Epilepsy Australia. 

A copy of Epilepsy and the 

Workplace: A guide for workers and 

employers can be downloaded at 

www.epilepsyaustralia.net 

Children with epilepsy do not 

appear to face an increased risk for 

seizures while watching 3-D TV, a new 

German-Austrian study suggests. 

However, the results did reveal that 

about one in five of these children is 

vulnerable to other unpleasant reactions 

when viewing 3-D television, including 

nausea, headaches and dizziness. 

“Normal people have a very low risk 

to get a seizure while watching 3-D,” 

explained study author Dr. Herbert 

Plischke, executive director of the 

University of Munich’s Generation 

Research Program. In contrast, he noted 

that people with epilepsy – particularly 

children – could be expected to have 

a “higher vulnerability” in terms of 

overall seizure risk in such a setting. 

However, among a group of young 

people with epilepsy, “we could not see 

any provoked seizure which was caused 

by 3-D,” Plischke said. 

He and his colleagues from the 

University of Salzburg in Austria are 

presented their findings at the American 

Epilepsy Society annual meeting in 

Baltimore. 

As a concept, 3-D technology is hardly 

a cutting-edge idea, harkening back 

more than half a century to the 1950s 

Vincent Price classic film “House of 

Wax.” But the experience of donning 

special glasses to view an “extradimensional” 

effect has undergone a 

cinematic renaissance in recent years, 

led by the box-office success of the 

movie “Avatar.” 

Jumping on the bandwagon, TV 

manufacturers have sought to bring 

the experience right into the living 

room, with TV sets that are hard-wired 

to provide 3-D viewing of properly 

formatted shows. 

The move has raised concerns over 

how the technology may impact various 

audiences. Recently, some researchers 

cautioned that nearly one-third of all 

viewers may be prone to experiencing 

headaches and/or eye fatigue when 

viewing a 3-D movie because of poor 

eye coordination. The resulting strain, 

they said, could prompt an unpleasant 

experience equivalent to that of 

seasickness. 

People with epilepsy are a more 

specific worry, given their sensitivity 

to the flashing lights and red and blue 

light alterations contained in certain 

TV programming and video games. 

As a result, some TV manufacturers 

(such as Samsung) have published 

public warnings, alerting viewers to the 

potential risk for epileptic seizures or 

stroke when viewing 3-D technology. 

Against that backdrop, the current 

investigation set out to assess the impact 

of 3-D on children with epilepsy viewing 

the technology on TV. 

The team focused on 100 children 

(average age 12) who had epilepsy or 

were deemed to be at risk for epilepsy. 

All the kids underwent a standard 

test for photosensitivity. Each was then 

asked to wear 3-D glasses and sit about 

six-and-a-half feet away from a 50-inch 

3-D TV: 

a seizure risk? 

plasma 3-D TV. 

During 15 minutes of viewing, only 

one child experienced a seizure, and that 

particular child was noted as being prone 

to routinely experiencing three to four 

seizures per day. 

Symptoms of nausea, headache 

and dizziness went up during both 

photosensitivity testing and 3-D 

TV-watching (in 15 percent and 20 

percent of cases, respectively). But the 

near total absence of seizures, combined 

with the benign results of EEG readings 

taken during sensitivity testing and 

3-D viewing, led the team to conclude 

that 3-D TV viewing posed little risk to 

children with epilepsy. 

The team suggested that seizure 

risk is probably more a function of 

differences in TV content rather than 

TV technology, with certain patterns, 

colours and flickering images raising the 

threat of seizure more than 3-D images. 

Dr. Orrin Devinsky, director of NYU 

Langone Medical Center’s Epilepsy 

Center, agreed. 

“It sounds perfectly in line with what 

I might expect,” he said. “If there was 

to be a problem, it would be with the 

content, namely flashing imagery. And 

that would be a present concern in 2-D 

or 3-D.” 

Alan Mozes, HealthDay 


“Keeping Epilepsy in Mind” 

A Community Awareness 

Campaign 

Spring got off to a good start for 

people with epilepsy in Australia 

this year, with a community awareness 

campaign ‘KEEPING EPILEPSY IN 

MIND’. This campaign was supported 

by UCB Pharma and sporting champions 

with personal experience of epilepsy 

including Olympic cyclist Marion 

Clignet, Commonwealth cyclist John 

Trevorrow and ‘Joffa’ Corfe from the 

Collingwood Cheerleaders Squad. 

The aim of the campaign was to better 

inform the public about epilepsy and the 

needs of people with epilepsy, as well as 

launching the Longitudinal Survey as a 

nationwide project. Newly released data 

from the longitudinal study received 

wide attention through radio, television 

and newspapers. 

Professor Mark Cook was interviewed 

about the problems people with epilepsy 

face. Using the results of the most recent 

survey he said: 

“New data from the Epilepsy Australia 

and Epilepsy Foundation of Victoria 

national epilepsy longitudinal study 

– Needs, perceptions and experiences 

of people with epilepsy – show more 

than one-in-two participants have been 

hospitalised or injured due to epileptic 

seizures,” said Prof Cook. 

Disturbingly, one-in-five research 

respondents had experienced more than 

20 seizures in just 12 months. 

More than half (52 per cent) of 

the research respondents living with 

epilepsy had experienced depression, 

highlighting the psychological toll of the 

disorder,” Prof Cook said. 

“Furthermore, it was remarkable that 

one-in-two study participants reported 

unfair treatment in the workplace, 

school, community organisation, public 

place or at home due to their epilepsy.” 

We can see from Professor Cook’s 

words the value of the survey conducted 

in 2010. 

This valuable information continues 

to be derived from Australia Epilepsy 

Research Register. Established in 2006 

as the Research Participant Register by 

the Epilepsy Foundation of Victoria, this 

now national register provides the basis 

for a longitudinal study to demonstrate 

the psycho-social impact of epilepsy 

across the whole of people’s lives in 

Australia. Two surveys or ‘waves’ have 

now been conducted in 2007 and 2010. 

Extensive data have been collected on 

income, housing, marital status, costs 

of care and quality of life. The current 

analysis explores access to epilepsy care 

and mobility issues. 

The results from Wave 2 of the 

longitudinal research conducted with 

people with epilepsy in a community 

setting relate to costs of healthcare, 

driving and transport related to income, 

age and gender. 

Surveys will be undertaken every 

two years exploring people’s incomes, 

housing option, employment status, 

costs of health care and quality of life 

issues. While giving a rare picture of 

how people live with epilepsy in the 

community the results will also provide 

evidence to argue for better government 

policies and assistance to people with 

epilepsy. 

Planning for research in the 

future 

HAVE YOUR SAY! 

At a recent Research Working Group 

meeting members discussed what future 

research would most benefit people with 

epilepsy. We decided to put the question 

to participants of the Australian Epilepsy 

Research Register. There are three 

broad areas that client services workers 

most often receive phone calls about. 

You can tell us which of these areas is 

most important for future research that 

will benefit all people with epilepsy in 

Australia. 

Please number each of the boxes from 

1 (the most important) to 3 (the least 

important) to give us your response. 

□ Accepting the diagnosis and 

learning how to manage the 

condition 

□ Barriers/restrictions/exclusions 

from everyday opportunities 

and activities 

□ Falling between the gaps; not 

being eligible for funding and 

services. 

You can complete this page and return 

it to: 

Ms Pat McGuirk 

Epilepsy Foundation Victoria 

818 Burke Rd 

Camberwell, Victoria 3124 

Alternatively you can complete the 

form on-line on: 

http://www.surveymonkey.com/ 

s/32LL87H 

It is with regret that we acknowledge 

the passing of Ms Ira Effrett who 

worked for many years with Epilepsy 

Foundation Victoria. She was a 

passionate worker with people with 

epilepsy in regional Victoria. We send 

our regards to her family and know how 

sorely she will be missed. 

Dr Christine Walker 

AUSTRALIAN 

LONGITUDINAL 

EPILEPSY STUDY 

Australia’s first longitudinal study 

of epilepsy looking at needs, 

perceptions and experiences 

of people living with epilepsy is 

underway. 

If you are a person living with 

epilepsy or a seizure disorder, or 

the carer of a person living with 

epilepsy or a seizure disorder, and 

you are interested in taking part 

in the survey, all you need to do 

is call the Epilepsy Foundation of 

Victoria on 03 9805 9111 or email 

epilepsy@epilepsy.asn.au and a 

registration form will be sent to you. 

Your participation will help shape 

the future for all Australians living 

with epilepsy. 

For more information about 

this study go to www. 

epilepsyaustralia.net 

Latest edition of 

global conversation 

launched in Rome 

The second edition of Sudden 

Unexpected Death in Epilepsy: 

continuing the global conversation 

was launched at the 29th International 

Epilepsy Congress in Rome, on 29 

August 2011. 

Epilepsy Australia is pleased to 

announce the publication of the latest 

addition to our current understanding of 

SUDEP in 2011. 

The editorial partnership in this 

second edition has been strengthened 

with Jane Hanna, Epilepsy Bereaved 

(UK) and Tamzin Jeffs, SUDEP 

Aware (Canada) joining editors Denise 

Chapman & Rosey Panelli, Epilepsy 

Australia, along with the International 

Bureau for Epilepsy endorsing and 

supporting the publication as part of its 

Golden Jubilee celebrations. 

The book blends case studies with 

scientific advances to bring the issue of 

sudden unexpected death in epilepsy to 

the forefront because by learning more, 

we can do more. 

One in 100 people worldwide have 

epilepsy, the neurological condition 

characterized by recurrent seizures. 

Research studies have demonstrated 

that approximately 1 in 1000 people 

with epilepsy per year die of sudden 

unexpected death in epilepsy, or SUDEP. 

The causes remain elusive, but 

identified risk factors include frequent 

generalized tonic-clonic seizures, 

seizures that are poorly controlled 

despite medication, and epilepsy 

requiring multiple antiepileptic 

medications. 

People with epilepsy may reduce their 

risk by working with their healthcare 

team to have as few seizures as possible. 

For some this could mean adjusting 

medications or lifestyle factors, for 

others it could mean exploring different 

avenues of treatment, such as surgery. 

Written for anyone with an interest 

in epilepsy, Sudden Unexpected Death 

in Epilepsy continuing the global 

conversation is a SUDEP digest, 

presenting a current picture of SUDEP 

that brings together both the science and 

the human experience. 

The collection of articles details 

current understanding from an array of 

unique perspectives, provides insight 

through the sharing of personal stories 

and explains the challenges of SUDEP 

around the globe. 

“This is a welcome resource to assist 

in the challenge to reduce epilepsy 

deaths,” says Mike Glynn, President 

International Bureau for Epilepsy. 

Leading SUDEP authors in the 

medical, legal and health professional 

fields and 16 families affected by 

SUDEP generously contributed their 

time and expertise towards this project. 

The long-term goal for highlighting 

SUDEP is to further scientific research, 

to help better understand the causes and 

to, ultimately, prevent these unexpected 

deaths. 

Many SUDEP questions have yet 

to be answered, but the global debate 

continues in this book, a follow-up 

to the 2005 publication Sudden 

Unexpected Death in Epilepsy: a global 

conversation. 

“This volume, six years after the first 

edition of Sudden Unexpected Death 

in Epilepsy: a global conversation was 

introduced, brings the field forward by 

leaps and bounds,” said Solomon L. 

Moshe MD, President, International 

league Against Epilepsy. 

With the support of IBE, some 

2000 copies were freely distributed 

to delegates at the 29th International 

Epilepsy Congress in Rome, allowing 

the book to reach a wide range of 

destinations throughout the world. 

Similarly, copies were printed by 

SUDEP Aware in North America, with 

2000 copies being distributed through 

Epilepsy Foundation USA affiliates. 

In our own region 100 copies have 

been forwarded to our Kiwi counterparts 

for distribution throughout New 

Zealand. 

29th International Epilepsy Congress 

J o s e m i r S a n d e r T o r b j ö r n T o m s o n 

n a r L i n a N a s h e f G a i l B e l l S S a m d e n D . L a h t o o 

NEW PUBLICATION! 

ria Thom Kate Riney Damian Clark Elizabeth J Donner Leone 

Ridsdale Paul Maynard Elson So Paul Schraeder Alicia Goldm 

a n R a a i n n e r S u u r g e s E m i l y y T u u e t 

Gordon Gordon Buchanan George Richerson Yvonne Langan Stephen 

Brown Brown John John Duncan Mark Cook Claire A snapshot Lathers Orrin of Devinsky 

Daniel Daniel Friedman Jane Hanna Fiona McDonald McDonald John-Paul 

Leach Keith Redhead Redhead Andres Kanner Mei SUDEP 

Sheng Duh Laurel 

Austin Stine Jakobsson Strømso Jeff Buchhalter Braxton Wannamaker 

Karen Osland Simon Shorvon Hanneke in 2011 de de Boer Boer Rosemary 

Panelli Denise Denise Chapman Kheng-Seang Lim Chong-Tin Tan 

Shung-Lon Shung-Lon Lai Lai Janet Mifsud Ding Ding Lesslie EDITORS Young Amadou 

Gallo Diop Mpoe Johannah Keikelame Denise Lilia Chapman Núňez-Orozco 

Jacqueline Beaussart-Defaye Fulvio Scorza Rosemary Tamzin Panelli Jeffs Josemir 

Sander Torbjörn Tomson Matti Sillanpää Jane Hanna Shlomo Shinn 

a r L i n a N a s h e f G a i l B e l Tamzin l Jeffs S a m d e n D . L a h t o o 

ria ria Thom Kate Riney Damian Clark Elizabeth J Donner Leone 

Ridsdale Paul Maynard Elson So Paul With Schraeder contributions Alicia from Goldm 

a n R a i n e r S u r g e almost s 60 epilepsy E m i l y T u e t 

Gordon Gordon Buchanan Buchanan George Richerson Yvonne professionals Langan Stephen 

Brown Brown John Duncan Mark Cook Claire Lathers Orrin Devinsky 

Daniel Daniel Friedman Jane Hanna Fiona McDonald John-Paul 

Leach Keith Redhead Redhead Andres Kanner Mei Sheng Duh Laurel 

Austin Stine Jakobsson Strømso Jeff Buchhalter Braxton 

Wannamaker Karen Osland Simon Shorvon Hanneke de Boer 

Rosemary Panelli Denise Chapman Kheng-Seang Lim Chong- 

Tin Tan Pick Shung-Lon Shung-Lon up your Lai free Janet copy Mifsud at the Ding IBE Ding counter! Lesslie Young 

Amadou Gallo Diop Mpoe Johannah Keikelame Lilia Núňez- 

Orozco Jacqueline Beaussart-Defaye Fulvio Scorza Tamzin Jeffs 

Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden Sudden 

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the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the the global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global global conversation 

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8 THE EPILEPSY REPORT DECEMBER 2011 THE EPILEPSY REPORT DECEMBER 2011 9 

International Bureau 

for Epilepsy 

1961 - 201 1 

50 years focussed on epilepsy 

www.ibe-epilepsy.org 

Rosey Panelli, Mike Glynn and Denise Chapman 

Rosey Panelli at the IBE stand 

Visit www.sudepglobalconversation.com 

to download the full text or individual 

articles, and follow the SUDEP global 

conversation as updates are posted. 

Books are provided free through 

Epilepsy Australia members, but there is 

a small charge per copy for postage and 

handling: 

Australia (surface mail) AUD 5.00 (p&h) 

International Inside Asia AUD 10.00 (p&h) 

If you would like a copy please contact 

your State Association or email: 

sudep@epilepsyaustralia.net

Motivated by a photo of 

his three sons fixed 

onto the handlebars of his 

bike, Linc Kelly pushed 

through 69 gruelling laps 

of the 3.1km Sandown 

raceway at the inaugural 

Ride4Epilepsy in September 

for the Epilepsy Foundation. 

Father of three Autism 

Spectrum Disorder sons, 

two of whom have epilepsy, 

Linc had “been a bit lost over 

the past months, not quite 

knowing what to do” after his 

middle son Elliott had been 

diagnosed, then Linc’s wife 

Robyn found Ride4Epilepsy. 

Linc sent an email to cycling 

friends throughout hometown 

Bairnsdale and neighbouring 

town Sale and was “shocked 

to learn just how many 

people suffer from Epilepsy.” 

Without delay, Team Kelly 

was formed with the goal to 

“set the record for the 6 hour 

ride.” 

Linc’s middle son Elliot, 

a severely autistic boy who 

is largely nonverbal, was 

recently found by wife Robyn 

unconscious and choking 

after a seizure. Epilepsy 

was not foreign to the 

Kelly family, as their eldest 

son “has suffered various 

partial complex and absence 

seizures” for two years but 

after having to resuscitate 

Elliot, and “the third trip in 

an ambulance we were quite 

numb and feeling helpless.” 

Ride4Epilepsy came along 

at just the right time for the 

Kelly’s. 

With around 250 riders on 

the day, kids on BMX’s and 

competitive cyclists on racing 

bikes, Ride4Epilepsy catered 

for the entire family. Event 

ambassador, world champion 

and Olympic medalist Marion 

Clignet, joined the riders 

on the course as a shining 

example of someone who 

has made the most of their 

Epilepsy diagnosis. 

Team Kelly threw 

themselves at the 

Ride4Epilepsy challenge, not 

only taking out the first prize 

for riding on the day but also 

currently sit in first place with 

their online fundraising page 

sitting on well over $2000 to 

date. The team lead by Ryan 

Cross and supported by Rod 

Smith, Eric Sjerp, Tim Boote, 

Sean Phillipson, Kevin 

Read, Shane Dove, Craig 

Williamson, Adrian Doe 

and Mick Lin, all of whom 

were instrumental in holding 

the team together. Linc 

was blown away and quite 

emotional at the kindest of 

complete strangers on the day 

who helped him through it. 

Linc and his army of riders 

will be back to support 

Ride4Epilepsy especially 

when they rated “this event as 

one the most satisfying and 

rewarding things that we have 

done.” 

Linc Kelly 

The inaugural Ride4Epilepsy 

was held on September 25th 

2011. With 254 riders pedalling 

around Sandown Raceway at 

all different speeds with Robert 

Oakenfull leading the way for 

the morning. World Champion 

and Olympic medallist, Marion 

Clignett, who began cycling after 

being diagnosed with Epilepsy, 

rode and provided advice to 

riders out on the track. Team 

Kelly led the way both on and 

off the course being the highest 

fundraising team, contributing to 

the over $25,000 raised for the 

Epilepsy Foundation. The Jayco 

Flyers made an appearance 

alongside Jeff ‘Joffa Corfe’, 

Epilepsy Foundation ambassador 

and Collingwood Supporter. The 

success of the Ride4Epilepsy 

means we are committed to 

making it an annual event, at 

present our venue has availability 

issues but as soon as we have 

resolved this we will be asking 

everyone to join us. 

Izla’s Purple Crusade 

Our daughter Izla Matilda has West 

Syndrome which is a rare and 

catastrophic form of epilepsy. 

Diagnosed at 4 months old, Izla would 

have up to 150 seizures a day either by 

her eyes flicking and her body jerking, 

or ones called head drops where she 

would lose all control of her head and 

it would just hit forward onto the floor, 

my shoulder etc. (she became very good 

at sucking wet flannels to stop the blood 

lips) while various medications have 

caused horrible side effects. She was 

also developmentally delayed. 

I am a true believer in early 

intervention. Since diagnosis Izla has 

been under the care of a physiotherapist, 

occupational therapist, speech 

pathologist, neurologist and two 

paediatricians! So our life has been a 

constant round of appointments! 

On 12 November 2010, at 16 months 

of age, we believe we found the right 

combination of medication as her 

seizures stopped (what we can see)!!! 

Since then she has started developing 

Jarrod, Asha, Kym and Izla Meers, City to Bay Fun Run, Adelaide. 

– she started sitting, rolling, then 

crawling by bum shuffling, then 

crawling on all fours and more recently 

she has started to stand and even walk 

with a walker. She has recently started 

to hold things and now enjoys feeding 

herself. She is one determined little girl, 

but remains on meds! 

Unfortunately West Syndrome is 

not well known in Australia. There are 

no support groups except for the three 

friends I have made via Facebook (yes it 

is a really good source of connection). 

I have always had one thing that has 

kept me sane and that has been HOPE. 

With a desire to get fit and healthy, 

both physically and mentally, I asked 

a few friends to join me. Then my 

amazing daughter beat the odds and 

decided that she was going to walk! 

What a better way to reward her than 

to run the 12km City to Bay run for 

the first time and raise much needed 

awareness and money for epilepsy. 

Izla’s Purple Crusade was born. 

First came the Facebook page telling 

Izla’s story and our entry in the City 

to Bay Fun Run to raise money for 

epilepsy. 

With the donation of T-shirts from 

Sandy Nelson Teamwear, Izla’s Purple 

Crusade was off and running. Business 

sponsorship soon followed as people 

were happy to support the Crusade, and 

family and friends became my support 

team holding fundraising events, online 

auctions, a movie night attended by 207 

people – all to support Izla and other 

kids like her with epilepsy. 

When the Everyday Hero page opened 

featuring Izla’s story, the donations 

flowed in. The Sunday Mail picked up 

the story as Izla was finding her feet. 

Meanwhile our Saturday training 

program continued and our team 

numbers were creeping upwards. 

And before we knew it the City to 

Bay was here. With a record crowd we 

went to the starting line. It was fabulous 

watching the Purple Crusade T Shirts 

gather around me and knowing in this 

massive crowd there were 160 of us 

wearing it proudly! 

We all set our own pace, and I must 

say I enjoyed every minute. 

I thought I would break down in tears 

as it had been such an overwhelming 

journey but I smiled over that finish line 

and all the way to our meeting point. 

The love, commitment and support from 

family, friends and total strangers was 

absolutely amazing. 

The total tally was $21,578.40 for The 

Epilepsy Centre SA & NT and a lot of 

community awareness!! 

Izla’s Purple Crusade has certainly 

made a difference in more ways than 

one! 


Kym Meers

Struck down by a seizure in June 

2008, Kathryn Oultram found 

herself in an induced coma for four days 

and hospitalized for several weeks. After 

countless seizures and tests during this 

time, Kathryn gained some stability 

through medication and started on her 

road to recovery. She was diagnosed 

with viral encephalitis. 

The residual impact of the infection 

left Kathryn with right-side weakness 

and recovery was similar to someone 

suffering from a stroke. Recovery 

involved rehabilitation, occupational 

therapy, physiotherapy and psychological 

counselling as Kathryn learnt to walk 

and care for herself again. Remarkably, 

within 18 months Kathryn had fully 

recovered, but the infection left her with 

epilepsy. 

Along with Kathryn’s remarkable 

recovery, came another surprise. At the 

end of 2010, Kathryn found that she 

was pregnant. Having been told that 

pregnancy is something she and husband 

Drew would struggle to come by, if at 

all, the news was truly wonderful. 

Yet pregnancy posed additional 

problems for them as they struggled 

with Kathryn’s seizures. Experiencing 

five to six seizures during the first 

month, Kathryn’s baseline medication 

remained the same, while an additional 

antiepileptic medication was prescribed 

and adjusted to ensure coverage 

during the remainder of her pregnancy. 

However she experienced an increase 

in seizure frequency during the last 

trimester. 

Happy endings! 

During this time Kathryn and Drew 

regularly visited the Epilepsy Australia 

website for information, while relying 

on each other and their families to get 

through. 

Realizing how difficult living with 

seizures and epilepsy must be for 

others, Drew, a rugby league referee 

both in the Newcastle competition 

and within the NSW Rugby League 

Junior Representative Referees based in 

Sydney, nominated Epilepsy Australia 

as beneficiary of the annual presentation 

night where money is raised for a chosen 

charity. With the support of the NSWRL 

Junior Representative Referees and 

coaches, his nomination was successful. 

The evening was a great success, with 

$1093 raised to support the work of 

Epilepsy Australia. The unpredictability 

of seizures was also brought home 

to the guests when Kathryn gave a 

demonstration of a seizure towards the 

end of the night! 

Some seven weeks later, Kathryn 

gave birth, albeit a little early, to a 

healthy son, Oscar Robert weighing in at 

3160gms. 

Kathryn’s seizures are not yet fully 

controlled, but with the confidence of 

a new mother she is taking it all in her 

stride. 

While the pregnancy was an anxious 

time for both Kathryn and Drew, with 

little Oscar thriving all thoughts are 

now focussed on the future with their 

beautiful son. 

Australian Pregnancy 

Register 

This voluntary, nationwide study that 

is enrolling women who are currently 

pregnant or who have given birth 

recently (infants up to 6-9 months of 

age) in the following categories: 

Women with epilepsy taking 

antiepileptic medication (AEDs). 

Women with epilepsy not taking 

AEDs. 

Women taking AEDs for allied 

conditions. 

Background 

From previous research it is believed 

that women who are taking an AED 

may have a slightly higher incidence 

(4-6%) of having babies with birth 

defects than the general population 

(2-3%). 

After ten years of data collection and 

analysis, there is now some evidence 

available to determine whether this 

small increase is related directly to 

the drugs, the epilepsy itself, or other 

factors. 

As a result from this study we are 

getting closer to defining safer 

treatment choices. 

Breast feeding Information 

Of 1114 women analyzed so far it 

has shown that 857 did successfully 

breast feed their babies and 257 

women didn’t breast feed. 

Of those that didn’t feed, 145 chose 

not due to the medication and the 

remaining 112 chose not to for other 

reasons relating to breast feeding 

(anatomical reasons, poor supply etc.) 

To participate in this study call 

1800 069 722 

For more information about the 

Australian Pregnancy Register 

visit www.apr.org.au 

women’s epilepsy network 

They came from all over Victoria – 

by bus, train and car to Queenscliff 

Guest house, where they were greeted by 

leaders Lisa, Linley, Jan and Gillian. 

Once settled, we all made ourselves 

a drink and socialised with new (& old) 

friends 

Pizza was arranged – so we chatted 

and ate, excited at meeting other 

women who all suffer with this dreaded 

condition known as epilepsy. 

Then came the ice breaker, through 

musical chairs spending two minutes 

with each person – a minute each to tell 

our names, interests and where we’d 

travelled from. But being women we 

all found this a little difficult – I mean, 

whoever succeeded with a one minute 

limit to meet and greet someone new? 

Still it was a great start and definitely 

broke the ice. 

Some of us took this opportunity to 

get the warm fuzzy envelopes with our 

own name on and personalise them with 

the paper, magazine, cardboard, feathers 

and shells at the craft table. 

Saturday morning saw the early birds 

rise to the challenge of an energetic walk 

led by Jan. 

The opportunity for a massage was the 

order for the day after breakfast, unless 

of course you decided some shopping 

or a coffee down the main street had a 

higher priority… 

Lunch was help yourself once our 

illustrious leaders had prepared such a 

healthy feast. 

After lunch all the women participated 

in Women’s Epilepsy Network (WEN) – 

discussing the possibilities of developing 

and even expanding WEN and the 

support it currently offers 

.Everything from social events, 

newsletters, guest speakers and even 

fund raising was discussed. 

Then time for a cuppa refill before 

‘Scott’ turned up with his many musical 

drums from Africa, Congo and more. 

Some of us even got to use various bells 

as percussion – including a cow bell… 

however, not all of us understood the 

contribution of a cow bell to our drum 

rhythms! 

We learnt various rhythms and how to 

use our hands to make different sounds 

on the drums. Most of us came away 

with a deeper appreciation of the art of 

drumming. 

As evening approached, another EFV 

leader, Janita arrived and we all got 

ready to head off to the local pub for 

dinner which was a great social event. It 

certainly was the place to be given how 

many others had decided to do the same 

thing. 

Back at the guest house, Janita 

showed two short DVD’s on what EFV 

is doing to gain public awareness and 

acceptance of people with epilepsy in 

the community – especially targeting 

the employment and also the disability 

sectors of EFV. These powerful tools 

are being used in many diverse areas 

of society such as Centrelink and as 

Electronic learning in various businesses 

to overcome discrimination. 

At this stage some of us headed to bed 

but others decided the night was still 

young… 

On Sunday morning, we packed, had 

breakfast, took early walks until, Tash 

our hairdresser, and Lesley, our makeup 

artist arrived for anyone to take up the 

challenge of having their hair or face 

beautified – and almost all took the 

plunge to become new women. We even 

had a transformation to a Cleopatra look 

alike! 

Last minute shopping and coffees 

were bought before lunch. 

After lunch our warm fuzzy envelopes 

were given out – each of us receiving 

compliments from various participants 

over the weekend. As we all gradually 

left, we held onto our warm fuzzies 

which would remind us of our great 

time away until the next great camp 

opportunity. 

However, I’m sure there’ll be lots of 

phone calls and emails between new 

friends made before the next camp!!\ 

Nenia Travou 


Reaching for the stars . . . 

When you first meet Joshua Gordon, 

his physical strength is obvious – a 

young man, healthy and strong – as he 

moves with a grace and power over the ice. 

A professional skater, Josh is touring the 

country with ISkate Productions and living 

his dream. 

Not bad for someone who had never put 

on a pair of ice skates until four years ago. 

But Josh is exceptional in more ways 

than one. Now 21, Josh had a precarious 

start to life. Born 12 weeks premature and 

weighing just 1185grams (2.6lbs), Joshua’s 

first three months of life were touch and go. 

Attached to tubes, a ventilator and confined 

to a humidity crib, his tiny body was spread 

out like an extended frog. Ironically, this 

actually gave him the physical flexibility to 

enable him to achieve the movements he is 

now known for as a figure skater. 

At around 12 months of age, 

developmental issues began to surface. 

Doctors discovered that his hearing was 

impaired; and he had continuous lung 

infections that developed into asthma. 

In 2000, at age 10, Joshua’s disabilities 

were categorized as Level 6 Speech- 

Language impairment (SLI), Autistic 

Spectrum Disorder (ASD) and Intellectual 

Impairment (II). Joshua also has epilepsy. 

In 2007, his father’s work meant that 

Joshua and his family had to move to 

Canberra. This was extremely hard 

on Joshua as he thrives and relies on 

consistency and stability. The secure 

environment and familiarity with his 

Special School and friends in Queensland 

had gone. 

In Canberra, his mother was looking for 

something to give Joshua some fun. She 

took him to the ice rink but had no idea 

at the time that this was the beginning of 

something very special. Joshua took to the 

ice like a ‘duck to water’. He was 17. 

Joshua showed an interest in playing ice 

hockey but was told he needed to learn to 

skate first and learn he did! Within six 

weeks of beginning lessons, Joshua had 

passed 10 Aussie Skate Badges and within 

five months, he was representing Australia 

at the New Zealand National Figure Skating 

Championships – he brought home the first 

Gold medal ever won by an Australian in 

the Special Olympics division. 

In January 2008, Joshua won first 

prize in the Technical Preliminary 

Division, in the mainstream competition, 

at the Summer Trophy in Brisbane. 

In August 2008, unexpectedly, and 

for no apparent reason, Joshua began to 

have seizures putting him behind in his 

schedule and goals. However, by 2009, 

his medication had brought the seizures 

well under control and Joshua was back 

on track chasing his dream. 

Joshua’s natural ability, intensive 

training regime and unconditional 

commitment to his sport have seen 

Joshua progress rapidly through the 

National Ice Skating levels. Joshua 

found his sport late for a beginner skater, 

which meant he had to work three times 

as harder to reach Senior Ice Dance and 

Novice Men’s Skater level. 

But Josh’s life really turned around 

when he met coach and mentor Kristian 

Ryan. Recognizing something unique 

in Josh, Kristian has been 

responsible for helping Josh 

transition from a very quiet 

boy, to one who can perform 

for the public. 

‘My first impression was 

a kid with such ambition 

and devotion to the sport. 

He was so keen to learn, 

so respectful and his 

motivation is amazing, ‘ 

said Kristian. ‘He is unique 

in that he will just train and 

train. Sometimes I have to 

drag him off the ice.’ 

When asked about 

Kristian, Josh said he had 

helped him in ways he really 

can’t explain. ‘I kept my 

emotions to myself. Kristian 

got me to act more, to show 

expression. He showed me 

how to release my inner self,’ 

said Josh. 

Josh’s mum, Anita, agrees. Prior to 

skating, Josh would be always in his 

room watching Disney DVDs. He found 

it difficult to talk to people, to interact 

socially. Now to see him be a part of 

Kristian’s production company touring 

the country in the Winter Festival and 

performing on ice, Anita just can’t 

believe that Josh has finally found what 

he was born to do. When asked about 

Kristian, she just says ( a little tearfully) 

‘He has given this kid life.’ 

Since the completion of the Winter 

Festival, Josh competed in the 2011 

Dragon City 

Trophy & 


Sun Loong 

Artistic 

Challenge 

recently held 

at the newly 

opened, 

world class 

venue, 

Medibank 

ICEHOUSE 

‘ You don’t need to read, 

you don’t need to write 

– you just have to show 

expressions – who you 

are inside’. 

in Melbourne where he won the Dragon 

City Trophy in his Division, and 

the Judges’ Trophy for Best Overall 

Performance in the Competition. 

Josh’s dream is to perform with 

Disney on Ice. ‘You can do different 

characters such as Goofy, and I thought 

why not! I’ll give it a go.’ 

Kristian, himself a past member of the 

Disney on Ice troupe, knew how much 

training and dedication would be needed 

to secure an audition, and guided Josh 

through his audition tape. 

‘Josh is capable of anything he puts 

his mind to and if his dream is to be on 

Disney on Ice, then my hope is that he 

can fulfill that dream,’ said Kristian. 

Josh has got past the first round with 

the great news that he has been granted 

an audition. 

While 

Joshua’s 

ultimate dream 

is to skate for 

Disney on 

Ice he wants 

to build a 

successful 

career within 

the sport and 

become a 

professional 

coach to young skaters. Josh is 

currently undertaking Level 1 Coaching 

Accreditation, having recently achieved 

his certificate for the On Ice section 

of Training. His determination and 

Josh as ‘Louie the Chef’ from The Little Mermaid with mentor and coach Kristian Ryan. 

commitment to achieve what many 

people would once have thought 

unachievable has been met with the 

greatest admiration from his coaches, 

judges and officials within the sport. 

Most importantly, Joshua wants 

to show to world that people with a 

disability are just as capable of achieving 

their dreams as anyone else.

EPILEPSY WITHOUT WORDS 

Winners of the Golden Jubliee Photography Competition 

With a total number of entries 

in excess of 300, the judging 

panel for the IBE’s Golden Jubilee 

photography competition were faced 

with a very difficult task in selecting 

the overall winner. Some amazing 

photographs, some telling very 

personal stories, others using fantastic 

photographic techniques, were received 

from all over the world. All the images 

received before the deadline of 1st May, 

are available to view at http://www.ibeepilepsy.org/taskforces/jubilee-photocompetition 

Pieces by Danish photographer Thilde 

Mørup Christensen, was selected by the 

judges to receive first prize, carrying 

with it cash prize of US$3,000. Voting 

individually, this was the highest 

rated photograph by each member of 

the judging panel, making it a clear 

winner. I am sure you will agree with 

the judges that this is a very compelling 

image using advanced and complex 

photography techniques and delivers 

the brief – an image of epilepsy without 

words. 

Second prize of US$2000, went to 

Swedish photographer Anders Nilsson 

for his photograph titled Seizure. This 

image also used interesting techniques to 

demonstrate the feeling of epilepsy. 

Given the high number of entries, it 

was a surprise that two images tied for 

third prize receiving US$500 each. The 

winners were James Leahy from Ireland 

with Fear of it all, and Kai Löffelbein 

from Germany with Look. 

In the mobile phone category, the 

prize winners were: Lotta Hoffback- 

Kaljo, Sweden (First prize US$500) for 

Light in the Tunnel; Sherwyn Vargas, 

Philippines (Second Prize US$300) for 

My world and me, and Patricia Simpson- 

Green, USA (Third Prize US$200) for 

1st known Grand Mal at 60 miles per 

hour. 

IBE would like to thank the members 

of the judging panel: 

• Denise Chapman, Australia 

• Shunglon Lai, Taiwan 

• Susanne Lund, Sweden 

• Peter Murphy, Ireland 

• Simon Shorvon, UK 

• Tatsuya Tanaka, Japan 

• Sam Wiebe, Canada 

for their diligent consideration of all 

entries received. 

Supported by UCB Pharma SA 

Reprinted from IE News, Issue 2011 with 

acknowledgement to Ann Little. 

Previous page: Pieces by Thilde Morup Christensen 

This page, clockwise from top left: 

Seizure by Anders Nilsson 

Fear of it all by James Leahy 

Look by Kai Loffelbein 

Light in the Tunnel by Lotta Hoffback-Kaljo 

My world and me by Sherwyn Vargas 

1st known Grand Mal at 60 miles per hour by Patricia 

Simpson-Green 


Written Declaration on Epilepsy passed by 

European Parliament 

The European Written Declaration on Epilepsy 

was approved by the EU Parliament in 

Strasbourg, on Thursday 15th September, 2011. 

In order to have a written declaration approved, 

a majority of the 768 elected MEPs (i.e. 369 MEPs) 

must sign it within a tight time limit. When the 

declaration closed for signatures it had received 90 

more signatures than was required for approval. 

With the signatures of 459 MEPs supporting the 

declaration, it has the third highest number of 

signatures of all disease related declarations since 

2004 – which are the earliest available records. 

This great achievement is thanks to the IBE 

members and ILAE chapter associations in Europe 

who diligently and repeatedly contacted their local 

MEPs to encourage them to sign. 

The value 

The Written Declaration on Epilepsy is now 

a very valuable document that can be used at 

member and European level, for example: 

• in advocating for increased research 

funding; 

• advocating for improved healthcare facilities 

and services provision for people with 

epilepsy; 

• building other significant initiatives at 

European level. 

In addition MEPs can use the declaration to 

launch and relaunch initiatives that come within 

the EU’s remit. 

EN 

0022/2011 

Written declaration on epilepsy 

The European Parliament, 

– having regard to Rule 123 of its Rules of Procedure, 

A. whereas epilepsy is the most common serious disorder of the brain, 

B. whereas 6 000 000 people in Europe have epilepsy, with 300 000 new cases diagnosed 

each year, 

C. whereas up to 70% of people with epilepsy could be seizure-free with appropriate 

treatment, while 40% of people with epilepsy in Europe do not receive such treatment, 

D. whereas 40% of children with epilepsy have difficulties at school, 

E. whereas people with epilepsy in Europe experience high levels of unemployment, 

F. whereas people with epilepsy are exposed to stigma and prejudice, 

G. whereas epilepsy damages health but also disrupts every aspect of life, and can impose 

physical, psychological and social burdens on individuals and families, 

1. Calls on the Commission and Council to: 

– encourage research and innovation in the area of prevention and early diagnosis and 

treatment of epilepsy; 

– prioritise epilepsy as a major disease that imposes a significant burden across Europe; 

– take initiatives to encourage Member States to ensure equal quality of life, including in 

education, employment, transport and public healthcare, for people with epilepsy, e.g. by 

stimulating the exchange of best practice; 

– encourage effective health impact assessments on all major EU and national policies; 

2. Calls on the Member States to introduce appropriate legislation to protect the rights of all 

people with epilepsy; 

3. Instructs its President to forward this declaration, together with the names of the 

signatories, to the Commission and the Parliaments of the Member States. 

Pan American Health Organisation (PAHO) 

approves Strategic Plan for Epilepsy 

The countries of the Americas, with 

the support of the Pan American 

Health Organization/World Health 

Organization (PAHO/WHO), will work 

together to create national programs 

for the care and treatment of epilepsy, a 

neurological disorder that affects some 5 

million people in the Americas. Globally 

the disorder affects some 50 million 

people. 

Only a few countries in the 

hemisphere currently have a national 

epilepsy care program in place. At the 

51st PAHO Directing Council meeting 

representatives of PAHO/WHO Member 

States approved a Strategy and plan 

of action on epilepsy that calls for the 

creation of similar programs in the rest 

PE464.670v01-00 2/2 DC\865022EN.doc 

of the countries. 

As of this PAHO/WHO Directing 

Council resolution, health authorities 

from different countries of the Americas 

agreed to start considering epilepsy a 

priority issue and to reduce the treatment 

gap by strengthening the health sector 

response to the disorder, with a focus 

on primary care and integrated service 

networks. Currently more than 50% 

of the people with epilepsy in Latin 

America and the Caribbean do not have 

access to appropriate treatment and care. 

The Strategy and action plan 

was developed by PAHO/WHO in 

collaboration with the International 

League against Epilepsy (ILAE), the 

International Bureau for Epilepsy (IBE), 

ministries of health and other national 

organizations, WHO’s Department of 

Mental Health and Substance Abuse, and 

other experts. 

The presentation of the regional 

Strategy and action plan on epilepsy 

took place in Tegucigalpa, Honduras in 

October. 

More than 40 international experts, 

health ministry officials, representatives 

of the civil society and of associations 

of families of people suffering from this 

disorder were present at the meeting. 

They also discussed practical ways to 

implement the Strategy in the context of 

Latin America and the Caribbean and 

possible lines of cooperation with the 

support of the ILAE and IBE. 

9th Asian & Oceanian 

Epilepsy Congress 

Manila, Philippines 22–25 March 2012 

www.epilepsymanila2012.org 

Welcome to Manila 

Manila, also known as the Pearl of the 

Orient, is the cosmopolitan capital of the 

Philippines. The city flanks beautiful 

Manila Bay and offers a blend of 

cultures, a good supply of historic sights 

and places to see, and unforgettable 

experiences. 

The Congress will be held at the 

SMX Convention Centre – a world class 

venue. The SMX is an integral part of 

the Mall of Asia Complex that integrates 

business with recreation, shopping and 

entertainment that addresses needs of all 

delegates. 

Scientific Program 

More than 100 local, regional and 

international speakers will present a 

range of topics that are highly relevant 

to recent scientific, clinical and 

social developments in epilepsy. The 

main topics of the Congress will be: 

“Epilepsy and the Developing Brain”, 

“Epilepsy Genes and Beyond”, “The 

Impact of Epilepsy and its Treatment” 

and “Epileptic Networks and Seizure 

Propagation”. 

Epilepsy & Society 

Symposium 

A one day Epilepsy & Society 

Symposium will take place on Saturday, 

24th March, 2012. An exciting program 

has been developed for people with 

epilepsy, their carers, family, friends. 

And for those professionals working 

with people with epilepsy in the 

community, whether that be in the 

disability sector, education, employment, 

nursing, and the leisure sector – there is 

something of interest for everyone. 

Topics will include “The Impact of 

Epilepsy”, “Sudden Unexpected Death 

in Epilepsy”, “Empowering People with 

Epilepsy”, “Anxiety and Depression”, 

and “Epilepsy and Pregnancy”. Each 

presentation will include people with 

epilepsy speaking from personal 

experience. 

With separate registration, this 

day program will also provide the 

opportunity to meet many people from 

across the region and share your points 

of view. 

Outstanding Persons with 

Epilepsy Award 

Continuing the tradition of past 

Congresses, the Outstanding Persons 

with Epilepsy Award will once again be 

awarded in Manila. 

This Award came about during the 

4th AOEC in Nagano, Japan in 2002, 

under the guidance of Dr Park (Korea), 

Dr Marshall (Taiwan), Dr Kubota 

(Japan) and Dr Mehndiratta (India) who 

developed the idea of the ‘outstanding 

persons with epilepsy award’ to 

encourage people with epilepsy to not 

be ashamed of their condition and to 

overcome the heavy culturally defined 

stigma and discrimination that exists in 

the region. 

This Award was presented to very 

worthy recipients, nominated by their 

respective Chapters, at the subsequent 

Congresses in Bangkok 2004, Kuala 

Lumpur 2006, Xiamen 2008, and 

Melbourne 2010. 

In Manila 2012, the award will be 

made during the opening ceremony, 

celebrating people with epilepsy who are 

inspirational in their determination to 

live fulfilling lives. 

ILAE presents: STAND UP FOR EPILEPSY 

The International League Against 

Epilepsy (ILAE), through the 

Taskforce on Sports and Epilepsy, is 

launching an exciting and innovative new 

project. 

The aim is to create a collection of 

photographs of famous sports persons 

meeting young people with epilepsy. The 

photographs will convey the message 

that people with epilepsy, like athletes 

themselves, can be inspired to achieve 

their goals and lead full and active lives. 

It is readily acknowledged that the 

public image of epilepsy mistakenly 

emphasis its rarity, disability, its social, 

educational and employment exclusions, 

and sporting non-participation. 

The London 2012 Olympics followed 

by the 10th European Congress on 

Epileptology gives an opportunity to 

break barriers of prejudice, ignorance 

and superstition. 

The collection of images will be 

exhibited at the 10th European 

Congress on Epileptology. It is also 

hoped to arrange a public exhibition at 

certain Olympic events. In addition, the 

collection is intended to be published as 

a book of photographs. 

Do you know a young person with 

epilepsy who loves their sport and 

dreams of meeting their sporting hero 

... a young Greg Norman, Cadell Evans 

or Kathy Freeman? Are you a sporting 

champion, or do you know one, who 

would like to participate in this project 

while making a young person’s dreams 

of meeting you come true? 

If so, please contact us at epilepsy@ 

epilepsyaustralia.net or call 02 9674 

9966. This project aims at inspiring and 

empowering people with epilepsy to full 

participation. 


Photos, from left: A crowded notice board at the school; a medical team sets off for the disaster area - with special rescue pass pasted on its windscreen; 

a classroom is turned into a supply room amd sleeping area for doctors; the school corridor serves as a waiting room for patients. 

Epilepsy Hospital Bethel, an 

Associate Member of IBE, opened 

in 1992 as a private hospital specialising 

in epilepsy surgery and care. The centre 

provides a comprehensive treatment 

program, including diagnosis of epilepsy 

syndrome and seizure type, treatment 

programs, as well as the provision of 

reintegration training and sheltered 

accommodation. 

Based in Sendai Province in North 

Japan, the area most badly affected by 

the March 2011 earthquake and tsunami, 

the hospital faced a huge disaster 

following these events. In response, the 

Japan Epilepsy Society (ILAE chapter in 

Japan) and Japan Epilepsy Association 

(IBE member in Japan) joined forces 

and rallied to help. Efforts were made to 

contact all of the 387 members of Japan 

Epilepsy Association by phone, although 

not all were found. 

An epilepsy hotline was set up to 

provide information and support to 

both persons with epilepsy and medical 

professionals. When the disaster struck, 

many of the medical professionals caring 

for those affected by the disaster would 

have had limited knowledge about 

epilepsy and the hotline provided an 

important source of information and 

advice. 

As a first response, medical teams 

from Shizuoka and Nishi-Niigata 

national epilepsy centres travelled north 

to the disaster area bringing stocks of 

anti-epilepsy drugs (AEDs) with them. 

One team stayed at the biggest shelter 

in the area (which had previously been 

a school) to provide treatment and care 

to persons with epilepsy who came 

looking for help. Another team visited 

other shelters announcing they were an 

epilepsy specialist team, that they had 

AEDs and could give advice. They also 

left written notices to let people know 

that there were AEDs in the school 

shelter and in some hospitals. 

They and other epileptologists in 

disaster area reported back that seizure 

activity for a significant number of 

people with epilepsy was exacerbated 

and some people with epilepsy had 

convulsive status epilepticus and were 

transported to hospital by helicopter, 

because the devastation of the tsunami 

left a large number of people without 

their medication. 

Japan Epilepsy Society and Shizuoka 

Epilepsy Center asked pharmaceutical 

companies to donate supplies of AEDs 

and these requests were generously met. 

However, transporting the medication 

to the disaster area remained a large 

problem. In the end, the supplies were 

transported to the hub-hospital by Japan 

Trucking Association, following a plea 

for help by Japan Epilepsy Association. 

The supplies were then distributed to the 

three main hospitals in the area. 

Reprinted from IE News, Issue 2011 with 

acknowledgement to Ann Little. 

PRESS DON’T PANIC AUDIO ALERT 

The Press Don’t Panic® audio button 

allows the wearer to record a 

personal message containing emergency 

procedure and/or essential medical 

information, in any language. This 

can then be played back whenever the 

wearer requires assistance. Playback can 

be initiated by the wearer or by those 

offering assistance. 

This revolutionary device is designed 

primarily for those with conditions 

(epilepsy, diabetes, allergies, asthma 

etc.) which make it likely that they may 

require assistance while out and about, 

from members of the public – who don’t 

have any medical training. 

Those 

assisting 

will then 

know what 

to do, who 

to contact 

and how to 

administer 

any 

medication 

the wearer may be carrying. This could, 

in some cases, be lifesaving. 

The Press Don’t Panic® audio button 

is a small device which can be worn 

conveniently. It is easily attached to 

outer clothing belt, bag or lanyard. It is 

lightweight and aesthetically pleasing to 

the eye. 

It features the following key attributes: 

• Audio 

• Record personal audio message via a 

simple button system 

• 120 seconds record time available – 

time to record specific instructions, 

medical information and contact 

details 

• Message can be recorded in any 

language – ideal for foreign holidays 

• Clear and audible play back 

• Repeated play back of recorded 

message 

• Ability to re record a new message 

Sam Docherty – the man 

behind the button 

Sam Docherty was diagnosed with a 

brain tumour in late 2005. The tumour 

was removed in October 2005. The 

neurosurgery was largely successful, 

but left Sam with partial paralysis and 

epilepsy. 

These outcomes inevitably led to 

a restructuring of lifestyle – public 

transport, daily medication and seizure 

anxiety. 

They also led to some very legitimate 

concerns: What can I do if I suddenly 

feel the onset of a seizure, or one starts 

before I can alert anyone? How can I 

advise anyone who may wish to offer 

assistance of my condition and the most 

appropriate action? 

Conscious that the vast majority of 

the public (including bus drivers, hotel 

and catering staff etc.) have little if any 

experience of; epileptic seizure, diabetic 

shock and/or coma, anaphylactic shock 

due to allergies or insect bites/stings, 

Sam looked for a product that could help 

him alert people to what to do – and just 

as importantly what not to do – in the 

event of an emergency. 

There appeared to be only a few 

alternatives: a small card which is kept 

in a pocket or handbag; a medallion or 

wrist bracelet. Each of these have their 

own limitations. 

Sam believed that the technology 

existed to create a much better, more 

obvious and more functional alternative; 

an audio ‘button’, worn on an outer layer 

of clothing. 

He spent the next four years designing 

and developing the Press Don’t Panic® 

audio button. 

Press Don’t Panic® can be purchased 

online for $65.60 plus p&h at 

www.pressdontpanic.com.au 

Quote Promo Code EAPDP1 and Press Don’t 

Panic® will donate 5% to Epilepsy Australia 

CONSUMER UPDATE 

Logging seizures and 

keeping good records 

is an essential skill for 

managing epilepsy 

and it has never been 

easier! 

SeizureTracker.com 

has announced an entirely new seizure diary 

that builds on the original Seizure Tracker 

experience. Now you can time and videotape 

seizures simultaneously 

in this revolutionary 

and simple to use 

application. When you 

stop the video and 

timer, it immediately 

creates an event log that 

is stored in a seizure 

library. You can edit 

the event at any time to 

add additional details 

about triggers, seizure 

description and what happened afterward. 

You can also use this app to log seizures 

without videos attached. This information can 

be easily synced to your SeizureTracker.com 

account. From there detailed reports can be 

created and shared with your care providers. 

Features: 

• Time and visually record seizures as they 

happen 

• Videotape seizures and upload them to 

YouTube 

• Mark time during recording 

• Automatically add recorded seizure to 

Library 

• Add additional information to seizure 

entries 

• Create seizure entries without video or 

automatic timer 

• Store information in Seizure Library 

• Sync iPhone logs and videos to your free 

SeizureTracker.com account to create 

detailed reports that are easy to share 

• Graph seizure events by daily count, type, 

and time of day 

Menstrual Cycle Tracker 

The Seizure Tracker Menstrual Cycle tool 

allows users to record the start of period, 

progesterone levels, ovulation and basal 

temperature on any given day. 

The menstrual cycle tool can be accessed 

and edited by visiting the event log. 


from the library for children 

Fly Danny Fly 

Chip Gilbertson and Gina Restivo 

Illustrations by Michelle Kondrich 

Evanston, Ill. 

Pig Up Station, c2011 

ISBN 978-0-9833689-0-8 

Written in gentle rhyming verse 

complimented by beautiful illustrations, 

Fly Danny Fly is dedicated to a lively 

little boy, Danny Stanton, who died 

through epilepsy. In this thoughtful 

story we accompany a sensitive boy 

as he contemplates his imagination. 

We meet his pretend friend – a flying 

pig – and his new kindred spirits who 

affirm is imaginary companion. Together 

they joyfully remind us to believe in our 

dreams and to allow others to do the 

same in their own way. 

A delightful uplifting story which will be 

enjoyed by children 3-99. 

The clinical management of patients 

with epilepsy and the associated 

medical literature are rapidly evolving. 

Evidence-based Management of 

Epilepsy differs from other epilepsy 

text books. It focuses specifically on 

Mommy, I Feel Funny 

Danielle M. Rocheford. 

Illustrations by Chris Herrick 

2009 

www.wymacpublishing.com 

ISBN 978-1-932279-53-5 

Based on a true story of Nel, a little girl 

who experiences having an epileptic 

seizure for the first time. The story 

takes you through the days immediately 

following her first seizure, bringing out 

Nel’s thoughts, fears and emotions, 

which are common with the discovery, 

understanding and acceptance of 

epilepsy. 

Having experienced epilepsy first hand 

for twenty-five years, the author shares 

her feelings through a child’s eye. It is 

the hope of the author that children will 

be able to relate to Nel in some way, 

and that her story offers them support 

and reassurance that epilepsy does not 

control their life. 

topics where the available evidence 

is sufficiently well developed to be 

synthesized into straightforward 

summaries of proven therapies, and 

hen evidence is missing or there is 

doubt, controversy or ambiguity, the 

distinguished authors offer treatment 

recommendations based on practice 

guidelines or consensus statements. 

The initial chapters cover critically 

important aspects of antiepileptic 

Lee, The Rabbit With 

Epilepsy 

Deborah M. Moss 

Illustrated by Carol Schwartz 

Woodbine House, 1989 

ISBN 0-933149-32-8 

Imaginatively written and beautifully 

illustrated, this delightful book tells the 

story of Lee and her family as they face 

the challenges of epilepsy. 

From Lee’s first seizure and initial visit 

to the doctor, through her diagnosis and 

treatment, the book explains epilepsy 

directly to children – not only to the child 

who has epilepsy, but to brothers, sisters, 

and friends as well. 

The story of Lee reassures the entire 

family with a positive, yet realistic look at 

epilepsy. 

Evidenced-based Management of Epilepsy 

Dr Steven C. Schachter MD 

tfm publishing Ltd, UK 

ISBN 978 1 903378 7799 

drugs (AEDs) and surgical treatment, 

such as when to start and stop AEDs, 

how to monitor their effectiveness, 

special considerations in women who 

become pregnant, and when to consider 

surgery to alleviate seizures. The 

following chapters look at depression 

and anxiety, treatment of the post-ictal 

state, technologies to predict and detect 

seizures, strategies for closing the 

treatment gap, and sudden unexpected 

death in epilepsy. The final chapters 

discuss behavioural therapies in the 

treatment of adults with epilepsy, 

herbal remedies, and the treatment of 

psychogenic non-epileptic seizures. 


“ 

face2face 

As the librarian of the most comprehensive epilepsy library in 

the southern hemisphere, located at the Epilepsy Foundation of 

Victoria, Pauline Brockett brings a wealth of knowledge and 

experience to this specialist role. 

Looking back on my working life, 

I have always been surrounded by 

books. Yet my aspiration was to be a 

nurse. 

However while waiting to be old 

enough to be accepted into training, I 

worked as a junior librarian at the US 

Information Library in Melbourne, 

part of the United States Information 

Service. When Dwight D. Eisenhower 

was elected US President, some 

eighteen months later, he closed most 

of the US information libraries around 

the world, including the Melbourne 

facility. 

This then gave me the opportunity 

to follow my dream and I began 

nursing training. As life has taught 

me, dreams don’t always live up to 

our expectations, and after nursing for 

nine months, I decided it wasn’t for 

me. 

With my appetite whetted for 

librarianship, I began working first 

at the Northcote Public Library and 

then, with the Preliminary Library 

Certificate, was librarian at Kraft 

Foods Ltd for thirteen years, in their 

private library attached to the research 

laboratories. Later, after completing 

a RMIT library qualification, on a 

Government Studentship, I was posted 

to the library at the Department of 

Foreign Affairs in Canberra, before 

moving on to Adelaide where I worked 

at the Bureau of Statistics. 

Marriage to an Army officer saw me 

head off to Singapore for three years 

and two beautiful daughters, Emma 

and Rebecca, soon followed. 

When my girls commenced 

secondary school, I began working 

at the Northern Institute of TAFE, 

where I gained further experience, 

first as a Research Librarian and 

then as a Mobile Librarian, visiting 

community centres, including Fairlea 

Women’s Prison, before moving on to 

the position of Greensborough Campus 

Librarian. 

Working with books has proved to 

be an extremely interesting career. 

Reference work is my favourite aspect 

of the profession as I really enjoy 

‘playing detective’. 

After working for a short time 

at the library for the Alzheimer’s 

Association, I joined the Epilepsy 

Foundation of Victoria in 2002. 

Of all the positions I have held, I 

have found the work at the Foundation 

to be the most stimulating. Having 

a personal interest in epilepsy, 

managing the information services for 

the Foundation continues to be very 

rewarding. 

The Epilepsy Foundation Library 

holds the most comprehensive epilepsy 

collection in the southern hemisphere 

and supports a wide range of clients, 

including people with epilepsy, 

carers, children, medical and health 

professionals and the wider public with 

an interest in the epilepsy. 

The collection comprises more 

than 2,600 books and audio visual 

materials, complete holdings of the 

major epilepsy-related journals plus 

extensive current information files 

containing articles on many subjects 

relating to both the study of epilepsy 

and living with epilepsy. 

My role of developing and 

maintaining the collection and 

disseminating information, includes 

assisting with all requests for 

information, including literature 

searches, whether made in person, by 

telephone, letter, email or website. The 

library has access to a wide range of 

journal articles and shares membership 

through other libraries and via the 

inter-library cooperative, Gratisnet. 

Through interstate and international 

requests for information, I have 

established contacts from around the 

world and am pleased to have been able 

to assist with their work furthering our 

understanding of epilepsy. 

An additional rewarding role is 

membership of the Research Group 

which contributes to the development 

of Social Research in Australia. 

I have also been privileged to 

coordinate the Biennial Memorial 

Service in remembrance of those who 

have died through epilepsy. Next year 

we will be holding our 6th service in 

12 years. These services are highly 

anticipated events that enable families 

to remember and celebrate the lives of 

loved ones who have died. 

Personally, I am currently, with 

flexible support from the Foundation, 

completing a Bachelor Degree of 

Western Culture. Although finding 

essays and exams very challenging, 

I am enjoying every moment spent at 

university. 

I have worked at the Foundation now 

for nine years and during this time I 

have been privileged to work with and 

assist many researchers completing 

their doctoral theses. One of the most 

exciting projects I have been associated 

with is Jim Chambliss’s research on 

epilepsy and art. The complex nature 

of this research continues to engage 

me. 

Please visit our library at http:// 

www.epinet.org.au/articles/library 

“

9th ASIAN & OCEANIAN EPILEPSY CONGRESS 

22-25 MARCH 2012 MANILA, PHILIPPINES 

24 THE EPILEPSY REPORT DECEMBER 2011

' You don't need to read, you don't need to write - Epilepsy Australia

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' You don't need to read, you don't need to write - Epilepsy Australia

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