Issue No. 1, 2013
Luke Quinlivan
& Riley Elson
Raising awareness!
Inside
¢ Nathan Jolliffe : Stands up for epilepsy ¢ RED update
 YouTube
Edward Lear &person
‘Ode to with
Nonsense’
epilepsyRaffaele
review
epilepsy
2012: Martin
¢Outstanding
Epilepsy & genetics
 ThePurple
‘E’ word:Day
epilepsy
and¢
discrimination
Telehealth
our young
heroes
¢Celebrating
Megan
Howe winsaIBE
Journalism
 forges
Modifiedpartnership
Atkins Diet
¢Tim
¢ EFV
Kennerway:
son’s
tributeAward
Welcome to the latest edition of The Epilepsy Report.
Epilepsy discrimination in the community and workplace was
the focus of our national awareness campaign for 2013. Newly
CONTENTS
Image courtesy The Epilepsy Centre, SA & NT
WELCOME
published data from the Epilepsy Foundation of Victoria’s Longitudinal
Survey, The ‘E’ Word: Epilepsy and Perceptions of Unfair Treatment,
highlighted the fact that the level of unfair treatment within the
workplace was still unacceptably high. This research, along with
individual stories and interviews, was well reported in the media
nationally in the lead up to Purple Day for Epilepsy Awareness.
We congratulate medical writer Megan Howe whose report Getting
Ahead of Epilepsy describing Professor Mark Cook’s pioneering work
in neurobionics won the print section of the UCB Pharma sponsored
5 15
18 20
International Bureau for Epilepsy Excellence in Epilepsy Journalism
Award for 2012. We are delighted to reprint her article here on page 5.
While technology offers the promise of new and innovative
treatments, it also provides new ways for people with epilepsy to
engage with the world. On page 8 we read how Scarlett Paige found
Purple Day: The “E” Word and
epilepsy discrimination
a kindred spirit in Lauren on Facebook and together travelled to
Washington where they ‘walked for epilepsy’. YouTube has allowed
others to express their own experiences and reflections on how
epilepsy impacts on their lives. Toba Schwaber Kerson’s study on
H
eralding Epilepsy Australia’s 2013
Purple Day Media Campaign
was the publication of The “E” Word:
Epilepsy and Perceptions of Unfair
Treatment, research findings from the
2010 Australian Epilepsy Longitudinal
Survey. Epilepsy & Behavior, Volume 27,
page 9 of YouTube videos poignantly reveals these appeals for a better
understanding of epilepsy to an anonymous audience.
And finally, taking centre stage is the Slingsby Theatre’s opera, Ode
to Nonsense, celebrating the life of Edward Lear. In his review on page
15 Jim Chambliss discusses Lear’s epilepsy and the impact it had on
his creativity that allowed him to produce such wonderful nonsense
verse as The Owl and the Pussycat, enjoyed to this day by adults and
Issue 1, April 2013, Pages 251–256.
children alike.
Contributors
Jim Chambliss, Ding Ding, Megan
Howe, Toba Schwaber Kerson,
Schichu Li, Yvette McMurtrie,
Scarlett Paige
Photography
Robert Cole, Dreamstime.com,
Slingbsy Theatre
Print Pegasus Print Group
ISSN 1836-747X
The Epilepsy Report is published
by Epilepsy Australia Ltd
857 Canterbury Road
Surrey Hills VIC 3127 Australia
Tel: 02 9686 8162
[email protected]
cover: The Owl & The Pussycat,
Courtesy Slingsby Theatre
2
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.
3
2013-2017 IBE Executive & WPR Executive 4
Vale: Dr Michael Hills 4
The “E” word shines light on discrimination
PLUS
Editor
Denise Chapman
Contributing Editors
Robert Cole, Dr Robert Mittan
Dr Frank Vajda,
Dr Christine Walker
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 Tasmania
Epilepsy Foundation of Victoria
Epilepsy WA
Excellence in Epilepsy Journalism Award winner
Megan Howe: Getting Ahead of Epilepsy 5
Epilepsy Foundation of Victoria wins Disability Award 7
Walking for epilepsy: Scarlett Paige
8
Epilepsy on YouTube: Toba Schwaber Kerson
Jim Chambliss: Celebrating Edward Lear
Epilepsy Care in China 17
15
Yvette McMurtrie reviews Modified Atkins Diet
Epilepsy & genetics 20
9
18
Electronic Health Record & you 22
Face2Face with Leigh Gilbert 23
National Epilepsy Helpline
1300 852 853
THE EPILEPSY REPORT JULY 2013
www.facebook.com/epilepsyaustralia
www.epilepsyaustralia.net
Dr Michelle Bellon, lead study author,
Disability and Community Inclusion,
Flinders University and Board member
of The Epilepsy Centre SA & NT,
says the research findings from the
national longitudinal study highlight
the significant threat of epilepsy to a
person’s mental health and wellbeing.
“Unfair treatment and stigma
may lead to stress, which is likely to
exacerbate epilepsy symptoms. This
can also trigger other health problems,
such as depression and anxiety,” said
Dr Bellon. “Most concerning is that
despite Australian anti-discrimination
laws, the level of unfair treatment
within the workplace reported by our
survey respondents indicates additional
mechanisms are required to uphold a
code of acceptable conduct.”
The research reveals among those
patients and carers who cited unfair
treatment due to their epilepsy at some
stage in their lives, 44 per cent had
experienced unfair treatment within the
last 12 months.
Among the most common types of
unfair treatment reported, the most
frequent response was discrimination (47
per cent), followed by exclusion (11 per
cent), and collectively assault, bullying
and teasing in school, workplace and
community settings (5 per cent).
“We asked respondents to elaborate
on these experiences, and received
some disturbing responses. One carer
who participated in the study on behalf
of a young boy living with epilepsy,
revealed that other parents at the child’s
kindergarten would not let their children
near the boy ‘in case their child got sick
and ended up like him’,” Dr Bellon said.
Professor Mark Cook, Chair of
Medicine and Director of Neurosciences,
St Vincent’s Hospital, Melbourne and
President of the Epilepsy Foundation
of Victoria, says all Australians can
play a role in addressing the stigma and
discrimination associated with epilepsy.
“Study respondents described
several possible causes for their unfair
treatment, which ranged from poor
community understanding of epilepsy
(20 per cent), to social judgement and
avoidance (12 per cent), to comments
highlighting fear of seizures, intolerance
and disbelief about the hidden effects of
their epilepsy,” said Professor Cook.
“Stigma still represents the biggest
challenge for people with epilepsy,
affecting their personal life and work
environment.
“Like all discrimination, it is based
on ignorance of the issue at hand. Sadly,
some people still believe epilepsy is
infectious or contagious, and many
believe it is a psychiatric problem,”
Professor Cook said.
“If more people acknowledged
epilepsy as a neurological condition with
a range of causes, just like heart disease
or stroke, it would help those living with
the condition lead a normal life.”
Raising awareness of epilepsy and
its impact on people’s lives is what
Purple Day is all about. With the help
of an ever-increasing band of supporters
Purple Day events were held around the
country. Highlights included:
„„ Kicking off Purple Day in Victoria at
the Melbourne Storm vs Roosters NRL
match
„„ Family fun days held in NSW,
Victoria and South Australia
„„ Cupcakes in the Park at Caboolture,
Qld hosted by Federal MP Wyatt Roy
„„ Epilepsy Queensland’s 2nd Annual
Purple Day Procession along Southbank
in Brisbane
„„ Purple Day Bakeoff in WA
„„ Local events held in Tasmania and
ACT.
We thank all the schools, businesses,
our Everyday Heroes and their generous
supporters, who not only raised
awareness of epilepsy but also donated
much needed funds in support of the
work of their state association.
2013 Purple Day pictorial adorns the
back cover – thank you!
THE EPILEPSY REPORT JULY 2013
3
IBE Executive
2013–2017
Getting ahead of
EPILEPSY
A
t the 30th International Epilepsy Congress, held in
Montreal in June, the newly elected IBE Executive
officially took office.
For the next four years, the IBE will be led by President
Dr Athansios Covanis (Greece), Secretary-General Sari
Tervonen (Finland) and Treasurer Robert Cole (Australia).
It has been 20 years since an Australian has been elected to
a position on the IBE Executive, with Robert Cole following in
the footsteps of the late R M Gourley (founder of the National
Epilepsy Association of Australia in 1983) who also served as
IBE Treasurer.
Robert’s commitment to IBE includes serving, in a
voluntary capacity, as Chair of the Western Pacific Region
(2009-2013); Chair, IBE Editor’s Network (2007–present);
and as Co-Chair 9th Asian & Oceanian Epilepsy Congress
held in Manila in 2012. At home, Robert is CEO, The Epilepsy
Centre SA & NT, while also serving as President of Epilepsy
Australia and Chair of the Joint Epilepsy Council of Australia
(JECA). The Australian epilepsy community congratulates
President Dr Athansios Covanis, Secretary General Sari Tervonen,
and Treasurer Robert Cole
Robert on his new appointment.
We also take this opportunity to acknowledge the work of the
outgoing executive: President Mike Glynn, Secretary General
Carlos Acevedo, and Treasurer Grace Tan. Great strides in
advancing the epilepsy cause internationally have been taken in
the past four years under their leadership. Most notable being
the European Declaration on Epilepsy; the great work of the
PAHO project in Latin America; and the 1st African Regional
Congress held in Nairobi in 2012.
However, a cause very close to all our hearts, is SUDEP
and the Australian epilepsy movement applauds Mike Glynn’s
commitment to put this often difficult subject centre stage at
the two International Congresses he presided over. We hope
SUDEP continues to be top of mind under the new presidency.
Western Pacific
Executive Committee
for 2013-2017
T
he newly elected Executive
Committee for the IBE Western
Pacific Region also officially took office
in Montreal,.
Dr Ding Ding from China, Western
Pacific Regional Vice President, will
carry on the work of past VP Dr ShungLon Lai, who has retired after 8 years
in the position. Dr Lai has worked
diligently in preparing the way to
establish IBE chapters in both Laos and
Vietnam, each presenting with its own
unique set of challenges to improving
Denise Chapman
Australia
Chair
Frank Gouveia
New Zealand
Vice Chair
epilepsy treatment and care.
The newly elected committee of Chair,
Denise Chapman, Vice Chair Frank
Gouveia and Secretary Dr Yuan-fu
Tseng along with Dr Ding is looking
forward to building on the work of the
previous executive, so ably led by Robert
Cole and Dr Lai.
The Western Pacific region is a vast
region that comprises China, Mongolia,
Yuan-fu Tseng
Taiwan
Secretary
Ding Ding
China
VP Western Pacific (ex offico)
Japan, Korea, Taiwan, Malaysia,
Singapore, Philippines, New Zealand
and Australia.
The aims and purpose of the Regional
Executive Committee includes
facilitating joint activities in the region
and supporting existing members within
the region by providing a forum for the
exchange of information, expertise and
experience.
Dr Michael Hills 1941-2013
O
ur good friend and colleague, Dr Mike Hills, passed away suddenly on May 1, 2013.
Mike will be long remembered for his commitment to the epilepsy community both in New
Zealand and internationally. Mike first served as IBE Secretary General in 1993, and he was to
remain on the committee for 12 years, serving two terms as Secretary General and a further term
as Vice President. In 1999 he received the IBE/ILAE Ambassador for Epilepsy Award and in 2009
his professional and personal commitment to the epilepsy community was acknowledged with the
IBE/ILAE Social Accomplishment Award.
Dr Hills was an Honorary Fellow of the Department of Psychology at the University of Waikato,
New Zealand. Research and teaching in the disability area was his passion, with over 100
publications and conference papers published in his name. Having epilepsy since the age of 19,
Mike’s pioneering psychosocial research into epilepsy will be his legacy.
4
THE EPILEPSY REPORT JULY 2013
Megan Howe,
a Deputy Editor at
Australian Doctor, has
been working as a
health journalist and
editor for more than 20
years in Australia and
the UK. Her awards
include the 2011 Royal
College of Pathologists
of Australasia media
award. This article
was first published
in Australian Doctor,
10 August 2012. See:
www.australiandoctor.
com.au
The Excellence in
Journalism Award
winners for 2012 are:
Megan Howe from
Australia (Print Category)
Laura Piper from
Scotland (Online Category)
Kieran Feeney from
Ireland (Radio Category)
A team from Finland,
including Anne
Flinkkilä, Sari Valto,
Hilkka Yli-Arvo, Päivi
Valkama and Anne
Kristo (TV Category)
All winning entries can
be viewed at http://
www.ibe-epilepsy.org/
winners-of-the-2012excellence-in-epilepsyjournalism-award/
The Excellence in Journalism Award, an initiative of the IBE
and UCB Pharma, recognises excellent journalistic work raising
awareness of epilepsy, giving a voice to people with epilepsy and
effectively engaging readers, listeners and viewers. Awards are
made in four categories: Print, Radio, Online, and Television. The
Print Category award for 2012 went to Megan Howe for her article,
Getting ahead of Epilepsy. The Epilepsy Report is pleased to
reprint it here.
Y
ou’ve no doubt heard
about the bionic eye
and the cochlear implant
– some of the most famous
developments in the fastgrowing world of medical
bionics.
But Professor Mark Cook
is quietly optimistic that an
even bigger group of patients
– the 15 million people
worldwide whose lives are
disabled by uncontrolled
epilepsy – have reason to
hope they could be offered
new, more effective therapies
in the not-too-distant future,
thanks to developments in
neurobionics.
Currently, of the one in 100
people worldwide who suffer
recurrent seizures throughout
their lives, about one-third
cannot be adequately treated
with available medications
or surgical therapies, the
Melbourne neurologist and
world leader in epilepsy
treatment told the recent
TEDx Wollongong event at
the University of Wollongong,
NSW.
“A lot of the problem
with epilepsy relates to its
unpredictability. We have to
soak people in medications
to prevent seizures that
be occurring for only a
few minutes a year,” says
Professor Cook, head of
neurology at St Vincent’s
Hospital, Melbourne and
chair of medicine at the
University of Melbourne.
“It prevents them driving,
stops them from working,
threatens their safety, costs
their life sometimes.”
But imagine if people with
epilepsy could know when a
seizure was going to occur.
And what if the drugs to treat
the seizure could be delivered
directly to the affected part of
the brain, exactly when they
are needed. Or, even better,
what if the seizure could be
averted completely?
A compact, driven man
with the knack of explaining
exactly what his complex
research could mean to
patients, Professor Cook
told the conference that
ground-breaking Australian
research into implantable
devices is now making that
kind of control over this
unpredictable condition a real
possibility.
One of the first implantable
devices to be trialled in
humans – including 15
Australian patients – is the
Seizure Advisory System,
which predicts when a seizure
is likely to occur.
Developed by US company
NeuroVista, the system
involves permanently
implanting electrodes on
the surface of the brain to
monitor electrical activity 24
hours a day. A pacemakerlike device implanted under
the clavicle records the
information and transmits
the records, analyses and
real-time ambulatory iEEG
data to a small pager-sized
device that the patient carries
with them. It has a series of
coloured lights: blue indicates
a very low risk of seizures,
white indicates a medium risk
and red indicates a very high
risk.
“If effective, it would
remove a lot of the disability
from people with seizures – it
might let them go to work,
play sport, conceivably even
drive. It might be that you
can provide therapies when
their status changes on the
recording,” Professor Cook
says.
While the device hasn’t
proved the answer to all the
Australian trial participants
– some have had it removed
and some have gone on to
have surgery – for young
Tasmanian Jason Dent it has
been life-changing.
In an interview with
Epilepsy Australia 10
months after the device was
implanted, Jason said that
THE EPILEPSY REPORT JULY 2013
5
when a red light appeared on
the monitor, he took fast-acting
medication. As a result, the
seizures that had previously
dominated his life – occurring
suddenly and without warning
–had completely stopped.
“I feel more confident in the
things that I do from day to
day and I enjoy the fact that I
am not having seizures every
fortnight,” he said. “I feel like I
have more control over my life,
as before the seizure would
come with no warning and
stop me doing the things that I
love doing, like my cricket and
timekeeping at the local footy
games.”
Professor Cook says Jason’s
implant remains in place
and, hopefully, can stay
there forever. “Suddenly this
changes everything.”
In fact, the potential of
these devices goes beyond
simply predicting the onset of
a seizure. “Conceivably you
could use devices like these to
actually control the release of
put the drugs we have in
polymers and we implant them
– at the moment in animals
only – over the surface of the
brain in the part where the
seizures come from.”
Eventually, the electrically
activated polymers might be
able to actually drive drug
release, he says. “Conceivably,
we could construct polymer
implants, which could not only
release the drug but detect the
seizure and use the energy in
the seizure itself to release
the therapy. This would be
remarkable.”
of years away but Professor
Cook says it is entirely
plausible that we could see
such devices available to treat
uncontrolled epilepsy within
5-10 years.
And if the polymer implants
do not prove the answer,
he says another approach
to suppressing seizures
– electrical stimulation
of the brain is also under
investigation in a project run
by the Bionics Institute in
collaboration with St Vincent’s
Hospital Melbourne.
Rather than predicting
seizures, the implantable
stimulator device will monitor
Marriage of two
worlds
the electrical activity of
The epilepsy research he is the brain via electrodes. If
conducting with the Intelligent abnormal neural activity
is detected, a therapeutic
Polymer Research Institute
waveform is then delivered to
and the Bionics Institute at
the right part of the brain to
the University of Melbourne
marks a long overdue marriage stop the seizure (see image...)
“It might liberate us
of two scientific worlds, say
altogether of the need to take
Professor Cook.
medications to treat epilepsy,”
“I have always been
he suggests.
interested in how to join the
difficult to control epilepsy
to have that control and
independence, to feel they
can contribute and get out
and work and participate in
community life,” she says. “It
could really open doors.”
In a recently published
paper on their research into
drug-infused polymer-based
implants, Professor Cook and
fellow researchers stated:
“The Holy Grail has so far
eluded researchers in the field,
however, strong progress is
being made.”
So are they truly within sight
of epilepsy’s Holy Grail?
“I used that term about being
able to predict seizures and
people ridiculed me,” Professor
Cook admits. “We’ve got the
old system where you ingest
drugs and they soak the whole
brain. Imagine if you could put
the solution where the problem
is. I think that is a bit of a
therapeutic Holy Grail.”
Epilepsy: the impact
Among people with epilepsy and their family members
55%
48%
16%
49%
78%
61%
33%
had been injured
as a result of a
seizure, with 64%
of those requiring
hospital treatment
for their injuries
considered they
had been unfairly
treated because
of their epilepsy
at some stage in
their lives
had full time jobs
even though the
majority were of
working age
were living below
the current poverty
line
faced medicine
costs between
$11 and $300 per
month
were on multiple
medicines for
epilepsy
reported full
control (ie, no
seizures over 12
months)
Findings of survey of 343 participants on the Australian Epilepsy Research Register, 87% of whom were people with epilepsy
and 13% were family members and carers.
Source: ‘Out of the Shadows’: Needs, Perceptions and Experiences of People Living with Epilepsy in Australia.
Findings from Wave 2 of the Longitudinal Survey, Epilepsy Foundation of Victoria, March 2012.
drugs,” says Professor Cook.
To try and male this vision
a reality, he approached
nanobionics pioneer Professor
Gordon Wallace, founder and
director of the University
of Wollongong Intelligent
Polymer Research Institute,
and told him he wanted to
“put drugs where they work”.
Not having to give
antiepileptics systematically
could avoid the damaging side
effects medication has on the
CNS and elsewhere in the
body.
“So that’s what we do. We
6
medical sciences and the
material sciences. It is difficult
to understand what is possible
if you have never had exposure
to what people in this area can
do.”
While there are still big
hurdles to overcome – the
formation of suitable polymers
for diffusing the drugs, finding
the optimal medications and
ensuring the implants are safe
to use in humans – there is an
air of optimism among those
in the field.
Human studies of the drug
infused implants are a couple
THE EPILEPSY REPORT JULY 2013
The new research is finally
shining a light at the end of
a long tunnel for the many
people who have unpredictable
and debilitating epileptic
seizures, says Epilepsy
Australia chief executive,
Denise Chapman.
Those people face constant
anxiety about when a seizure
might occur, meaning both
the loss of independence and
serious risks to health.
“I think it’s wonderful, it’s
a very exciting development,”
she says. “What promise it
can hold for people with very
DIagRaM of a DeVICe (above): arrays
of electrodes surgically implanted
on the surface of the brain will
monitor the complex patterns of brain
activity. These signals will be sent to
a processor (similar to a bionic ear
stimulator) and proceed to detect/
predict the epileptic seizure. Once
a seizure is detected, a therapeutic
electrical stimulus can be applied to the
electrodes in the appropriate area of
the brain to suppress the seizure.
Image courtesy of Bionics Institute.
Epilepsy Management Plan wins Victorian Disability Sector
Award and sets a standard for Disability
Care Australia, the national disability
insurance scheme.
A
new management plan for people
with disabilities who have epilepsy
or seizures has been developed with the
aim of condensing all existing epilepsy
plans into one cohesive, transportable
document providing a single point of
reference for support workers on how to
manage a person’s epilepsy.
The One Person, One Plan Initiative
which was formed by the Epilepsy
Foundation of Victoria in partnership
with Melba Support Services, Scope,
Villa Maria, Yooralla and the Victorian
Government Department of Human
Services was designed to meet the
unique needs of supporting a person
living with a disability who has epilepsy.
“Out of the shared frustration within
the disability sector, we recognised
a need for a standard epilepsy
management plan that all disability
organizations could use as the main
source of information on a person’s
epilepsy support needs,” said Wayne
Pfeiffer, Client Services General
Manager at the Epilepsy Foundation of
Victoria.
“Previous plans were long and often
not easy to follow or implement with
different plans to be completed by the
family and doctor for each service the
person accessed resulting in multiple
epilepsy management plans for the same
person.
“This new plan is a single, doublesided document, which can be used as
the basis for all support provided to a
person who has epilepsy. It covers every
aspect of a person’s seizures including
seizure type/s, what happens when the
person has a seizure, how to recognise
when the person is having a particular
seizure, and the appropriate response
for any given type of seizure. It also
outlines the appropriate response for the
person, in the event of an emergency.
“Not only is the plan transportable
across multiple disability organizations
but it gives the person with a disability
a much greater say in how their seizures
are to be managed and how they want
to be supported after a seizure,” Mr
Pfeiffer said.
The plan has been adopted by
Victorian Department of Human
Services Quality Division into its
Residential Practice Manual to
encourage all disability service
providers to adopt this new plan within
their services.
The new Epilepsy Management
Plan won the Excellence in Improving
Health Award at the Victorian Disability
Sector Awards 2013 announced at Zinc,
Federation Square, Melbourne on 19th
June.
Mr Pfeiffer said the One Person, One
Plan Initiative formed the basis of a
successful submission to DisabilityCare
Australia, the national disability
insurance scheme Practical Design
Fund, enabling the development of a
national Epilepsy Management Plan
for people with disabilities, called
Know me, Support me. This includes
resources to help people with a disability
understand their epilepsy including Easy
English material, audio files and a DVD
explaining the plan as well as a better
practice guide and resources for families
and support workers.
The Epilepsy Foundation worked in
partnership with Bendigo Community
Health Services and Flinders University
to pilot a national approach, that
researched the best way to support
people with a disability living with
epilepsy and their families to have a say
in how their epilepsy is managed under
the NDIS.
Support to disability service providers
and staff to manage epilepsy in an
individualized funding situation was
also explored. The Victorian Department
of Human Services, Sandhurst Centre
in Bendigo and Marillac Disability
Services in Caulfield agreed to act as
trial sites.
Mr Pfeiffer said this project may
also inform how the management of
Epilep
sy:
Know me
,
Support
me
Epilepsy M
A resource
anagemen
for better
practice
t in the Di
sability Se
ctor
other health
conditions can be managed
in the disability sector providing a better
practice guide and resources for both the
person and his or her family and for the
disability worker and organisation.
The project provided practical
solutions by examining current
knowledge and models and developing
tools to support people with a disability
and their families as well as disability
service providers and staff in the
transition to a NDIS and included the:
„„ Review of existing models of selfdirected management plans of health
conditions
„„ Review of the level of epilepsy
knowledge in the disability sector and
with people living with disability and
their families
„„ Development of a self-directed epilepsy management plan, tools and pilot
trial
„„ Review of existing models of health
condition management in disability
services
„„ Development of tools, protocols
and a pilot trial with disability service
providers
„„ Publication of epilepsy protocols,
self-directed epilepsy management plan
and tools.
All the resources: the Disability
Sector Guide to Best Practice, the
epilepsy management plan, emergency
medication management plans for
midazolam and rectal diazepam,
and easy-English Learning about
epilepsy booklet, can be reviewed and
downloaded from www.epinet.org.au
THE EPILEPSY REPORT JULY 2013
7
Thank You for
Watching:
Epilepsy on
YouTube
from the library
Toba Schwaber Kerson D.S.W., Ph.D.
Bryn Mawr College, Bryn Mawr
Pennsylvania, USA.
Scarlett Paige
walking for epilepsy
Diagnosed with epilepsy at 19,
and after extensive investigations
determined that surgery was too
risky, Scarlett decided to share
her story on an epilepsy facebook
page. It was here she met Lauren,
a kindred spirit, from Grayson,
Atlanta, USA, who had undergone
epilepsy surgery without success.
In 2012, Scarlett journeyed to the
US to join Lauren and her mother in
Washington for the National Walk
for Epilepsy. She returned again this
year and shares her experience with
us.
T
he 16th of April saw me return to
the United States of America for
my second and the 7th National Walk for
Epilepsy in Washington DC which was
held on Saturday 20th.
I arrived a few days early to let myself
adjust to all the time changes and to
do a bit of sight seeing. This year I
stayed at the same hostel as last year,
Duo Housing, and once again it was
outstanding, thanks to Mark and his
staff.
Friday morning brought me to meeting
up with my friend Lauren, who also has
epilepsy. Lauren makes the trip up from
Georgia with her Mother Cathy and this
8
THE EPILEPSY REPORT JULY 2013
year was their 3rd time taking part.
We met at their hotel as we had to pick
up our T-shirts and collect our bags for
walk day. Lauren and I both got a purple
shirt to represent that we have epilepsy
and Cathy received a white one to show
she loves, cares and supports someone
with epilepsy. After checking in we had
lunch and caught up on the last year.
On Saturday I woke early to a very
cold walk day. This year the Walk had a
new route along with a new length of 5
kilometres. After a few photos we made
our way through the 6,000 strong sea
of people with epilepsy, their families,
loved ones, friends, work mates, doctors
and the odd seizure dog. We set off to
investigate the many information booths.
I then went to the Purple Day booth
where I was given a badge and book
marks with the saying “Anyone With A
Brain Can Have a Seizure”. I saw there
was a world map and some pins to show
where you had come from to participate
in the Walk but no Tassie – I soon
changed that.
The Walk was kicked off with the
American National Anthem and some
zumba to warm everyone up! After a
3,2,1 count down we were off and down
around the Tidal Basin.
With each step and knowing how
many others were taking it with me,
makes me realise that I am not alone and
I am so much stronger than my epilepsy.
After the Walk finished there was
a question and answer session with 3
neurologists.
On Sunday, before Lauren and Cathy
left for home, we had lunch and said our
goodbyes for the year, which is always
hard.
I had a few more days in DC at the
wonderful Duo before a quick trip to
Chicago, which was also lovely. I set off
for home on the 28th of April.
At Los Angeles airport, just before
boarding, I heard of the airline staff
calling for help. I looked up and saw
that a female staff member was having
a tonic clonic seizure. I rushed over to
help as I was the only one who new how
to handle the situation! Once she had
regained consciousness she told me she
has epilepsy and thanked me for helping
her.
Epilepsy may be a part of who I am
and come on at any time but epilepsy
you will not win. Stay Strong!!!
above: Scarlett and Lauren at the finish line!
Introduction
I’ve studied depictions of seizures and epilepsy in mass
media for a long time, and throughout, what I and others
have found is that depictions for the most part continue to be
insensitive and do little to educate the public about epilepsy
(Baxandale, 2003, 2008; Kerson, Kerson & Kerson, 1999,
2000; Kerson 2007; 2008; 2010, 2012; Moeller, Moeller, Rahey
& Sadler, 2010). What I discuss here is the part of this larger
study that describes how epilepsy is portrayed on YouTube,
the dominant site for video sharing. I am heartened by the
information that I have gathered. On YouTube, people tell
their own stories rather than have them filtered or made up by
producers, writers or directors who are only using portrayals
to tell their story or market their product be it a film, tv show
or newspaper. The title of this article comes from a video made
by a young woman who thanks the viewer for watching. She
wants viewers to watch her video, hear her words and share
and understand her experience.
What is Video-sharing?
In video-sharing, the video host stores uploaded videos on
a server with coding that allows the public or invited guests
to view the video and, in turn, if they wish, embed the video
into other sites, blogs, etc. Video-sharing is one version of the
newest generation of mass communication that is defined by
digitalization and interactivity. The very nature of broadcast
media such as film and television means the audience shares
a common culture that is fixed and passive, but YouTube is
interactive and can be manipulated.
Thus far, YouTube is free and easy to use. It advertises
itself as a means for self-expression, vernacular creativity, a
global video-sharing service, and a way to Broadcast Yourself
(YouTube, 2010). In addition, it’s a media archive, social
network, broadcast platform, high-volume website and a meta
business.
Using YouTube, anyone with a little technical proficiency
and standard software can create and upload content on
the Internet and thus widely disseminate content (Jenkins,
2006). Contributors, who can be anyone from big-time media
producers to non-professional individuals, also have very
different purposes for using the site (Hand, 2008). Most
postings are made by amateurs who wish their experiences to
be shared by a potentially limitless audience (Wesch, 2008).
In terms of what is possible in mass media, this kind of
video-sharing is “a transformation of who is saying what to
whom” (Strangelove, 2010, p. 9) because the material can go
from amateurs making and posting the video directly to the
audience (Steigler, 2010). People post because they want to
keep viewers’ attention, have viewers bond with them and
even build social networks by creating videos of affinity
(Lange, 2010). They want to deepen connections not just to the
video but to themselves. Very often, uploaders ask viewers to
respond to them (Snickars & Vondereau, 2010).
While there are other such sites, YouTube dominates online
video-sharing. Quantcase.com, a website devoted to measuring
or estimating audience, reports that the audience for YouTube
is 17.7 million people per day in the United States of whom
50% are women, 57% are between 13 and 34 years, 16%
are over 50 years old, 65% are Caucasian and 50% have no
college education (Quantcase, 2010). Every minute, 24 hours
of video are uploaded (YouTube Fact Sheet, 2010). This year,
it is predicted that people will watch a billion videos a day on
YouTube.
Some downsides to using sites such as
YouTube
Some of the most positive features of YouTube, its utility
and malleability, also mean that messages can be easily
manipulated to alter the intent of the person who created them
(Zittrain, 2008). Anyone who knows how can move parts
or all of one’s video and, thus, change context and meaning.
The human rights organization Witness has great concerns
about people’s meddling with others’ postings. Witness
partners with human organizations world-wide helping these
organizations to use video in their campaigns (Witness, 2010).
Witness says that all information such as context, actions and
images have to be contained within the video to protect it from
such interference (Jenkins, 2009). There is also mounting
THE EPILEPSY REPORT JULY 2013
9
concern that videos are being produced commercially but
made to appear as if they are made by amateurs. In this
practice, called astroturfing, commercial productions look like
grass-roots offerings.
Control of Your Story or Loss of It
Since those with epilepsy and several other chronic
conditions often worry about control of their bodies and
how others view them, the idea of controlling one’s story is
especially meaningful. In his seminal work, The Wounded
Storyteller, Frank says:
People define themselves in terms of their body’s
varying capacity for control. So long as those capacities are
predictable, control as an action problem does not require
self-conscious monitoring. But disease itself is a loss of
predictability, and it causes further losses: incontinence,
shortness of breath or memory, tremors and seizures, and all
the other “failures” of the sick body. Some ill people adapt
to those contingencies easily; others experience a crisis of
control. Illness is about learning to live with lost control. Frank, 1995, p. 30.
In this way, uploading on YouTube gives individuals the
opportunity to control what they wish others to see and know
about themselves. Gilda Radner, who unfortunately died
before video-sharing came into existence, talks a great deal
about control in her autobiography, It’s Always Something.
Comedy is very controlling – you are making people
laugh. It is there in the phrase “making people laugh. You
feel completely in control when you hear a wave of laughter
coming back at you that you have caused. Probably that’s
why people in comedy can be so neurotic and have so many
problems. Sometimes we talk about it as a need to be loved,
but I think with me it was also a need to control. I’ll make the
decision whether to come out in my underwear or not, and I’ll
make the decision whether you see it or not. It’s like standing
in front of a whole group of people and having them under
your spell, having them in your power, and not letting them
get at you first. The hard part about illness and cancer is that it
feels so out of control” (1989, p. 183).
One of the first problems I tackled was the business of
being asleep for thirty-six hours during my chemo while the
world was going on. How could I make facing that out-ofcontrol time more bearable? I had Gene make a videotape of
me playing tennis on a Sunday. Just me . . .My plan was to
play the videotape in my room while I was asleep. . .I was so
proud of the idea, and it was another way for me to control the
situation” (1989, p. 150).
Control and loss of control are paramount issues in
uploading videos on YouTube. Now, it is difficult to predict
the effects of YouTube’s being bought by Google (Google buys
YouTube, 2006) and seeking sponsorship and advertising, and
more powerful forces seeking to institute rules and manage
the site (Snickars & Vonderau, 2010). Even the most personal
of postings often have ads subtly written onto the videos like
subtitles in a foreign language film.
Recent Studies of Epilepsy on YouTube
Of three recent studies of epilepsy on YouTube, one
concludes that misinformation and stigma persist (Lo, Esser
& Gordon, 2010). The top 10 most viewed videos on You
Tube were analyzed according to emotional impact, less
10
THE EPILEPSY REPORT JULY 2013
information-seeking comments appeared than informationproviding ones, and general negative attitudes were evident
among commentators. In the second article, 25% of videos
concerned people with epilepsy talking about personal
experiences, 28% contained an ictal event. About half of
the events were deemed accurate; the great majority were
sympathetic. Much of the information in the third article
(Kerson, 2012) is summarized below.
Method and Findings
I collected and analyzed 111 videos using the words
epilepsy and seizure posted on YouTube and uploading all
to which there was access that were created between July,
2006 and early 2011. At least two researchers saw all videos
and had perfect agreement about categorization. To code the
information, we use grounded theory techniques including
simultaneous involvement in data collection and analysis,
creation of categories from the data, the development of
middle range theories to explain processes and behavior, and
theoretical sampling to review and refine categories (Bryant
& Charmaz, 2010). The clips are divided between men and
women; the majority(67%), are Caucasian. Eighteen % of
the subjects are infants, 25%, children, 9% adolescents, 35%,
adults. Hits range from under 100 (10), to over a million
(2) with the great majority being under 100,000. Most are
narrated by a parent, the subject of the video or physicians
and/or epilepsy advocates. Almost half were made in a private
residence, and almost all of the videos are narrated are in
English.
Only clips that either contain representations of seizures or
discuss epilepsy directly are included. In relation to epilepsy
type, I refer to the way in which the narrator refers to the
incident or condition. More than half do not name a type. Of
the 45% that name a type, 24% are called complex partial,
14%, myoclonic, 10%, tonic-clonic, 10%, multiple types,
and 8%, infantile epilepsy. There are small instances of the
following: West Syndrome, Lennox Gastaut, absence, temporal
lobe, generalized, frontal lobe tuberous sclerosis, grand mal,
partial seizures, and atonic. In addition, two examples are
feigned seizures whose purpose is to entertain viewers.
The videos are also categorized according to auspices:
(1) personal, that is, made by an individual with epilepsy, a
friend or family member (63%), (2) medical, that is created by
professionals in medical institutions (23%), or (3) advocacy,
that is, made by professional advocacy groups (14%). I discuss
the medical and advocacy uploads in Kerson, 2012.
Personal Uploads
Here, I discuss only the personal uploads, 66 postings by
those who have been diagnosed with epilepsy, their friends
and relatives. Personal videos discuss the experience of living
with epilepsy. Postings of infants and toddlers having seizures
are by parents who want others to know what to look for, what
to do about it or simply to share their experience. The posts
are brave, direct, articulate and intensely personal. People
post using their own names and most frequently make the
videos at home. Teens often post in their bedrooms, those most
inviolable and individual spaces. Uploads combine videos with
photos taken at other times and in other venues. Sometimes,
they use voiceovers and sometimes, text. Music accompanies
some postings. It is as if those posting were responding
to a request to tell this huge audience about themselves
in thoughtful, personal ways. Parents post videos of their
children because they want to alert others or demonstrate to
their children’s physicians what the children are experiencing.
These never feel as if the poster was exploiting anyone. Other
videos are self-posted so that the uploaders can say that they
want supports, meaningful relationships and a satisfying life.
The least complicated of these postings are videos with no
illustrations with no narrative. Examples are: Absence Seizure.
My six year old daughter having an absence seizure (Posted
5/20/08; Viewed 3/12/13) and Chase 16-month-old myoclonic.
(Posted 12/06/08, Viewed 3/12/13). Other postings include oral
or written descriptions. Examples are: Postictal state – How I
look after having an epileptic seizure. (Posted: 8/17/09, viewed
3/12/13). Voice over: He’s lying in bed. Voice says – Do you
know what happened, Jamie? Do you know you’ve had a
seizure? No? Do you know what day it is? Do you know who
I am? Do you know who I am? (faint no). Do you know my
name? What’s my name? Any idea? It starts with J.
Abby’s Seizure. (Posted 5/11/09, viewed 7/2/10). “Let’s
take video of Abby... We gotta see what’s going on, okay
mommy?” “We were getting ready to go to daycare, they
were different so I decided to take a video.” “She’s kind
of just straining, there it goes right there” “just thought I’d
take a video so we can show it to Dr. Z when we go in on
Wednesday.” “This has been going on for about two minutes
already” “So we can show the doctor what’s going on with
you now. There it is again.”
There are several more elaborate explanations that discuss
the duration and/or intensity of a seizure, and/or some
information about context and history. Several examples
follow.
My Epilepsy vids2 (Posted 3/6/09, Viewed, 3/12/13). This
posting includes text that was written by Talia, the person
with epilepsy, and also a voice-over that was included by the
man making the video. He gently calls her, “Talia, Talia. You
feeling better.” “You have to get a bit of sleep now. I think
you are.” Following is the text that is inserted into the video:
Sometimes seizures occur while I am tired or already asleep.
I have already had some partial activity going on including
wandering and a Tonic Clonic. I am now showing more
Complex Partial Activity. I am unaware of what is happening
to me or my surroundings. Afterwards I feel dreamlike,
floaty, I can be partially aroused at times. I usually fall asleep
quickly, sometimes I may have more. Or I may progress into
Tonics or Tonic Clonics. These may last an hour or sometimes
through the entire night. However, most of the time I continue
to sleep without further incident.
Riley’s Journey with epilepsy (Posted 4/11/08, viewed
3/12/13). Following in the text that accompanies the series
of still photos and videos of Riley that her family made
Chase
over four years. The content shows Riley’s home and her
loving family, parents, older brother and grandparents in
everyday, quiet moments, family celebrations and a school
or church play. The music that accompanies the video is Joe
Cocker’s version of Everybody Hurts (2004), and Martina
McBride’s In My Daughter’s Eyes (2003). Born April 2004.
Everything was perfect. Then Riley suffered her first seizure
at 6 months of age. The affects of epilepsy extend far beyond
seizures. Developmental delays can include academic
underachievement, social stigma, deficient communicative
skills. The entirely family is affected by epilepsy and its
afflictions. Riley’s seizures have caused hospitalization for up
to 9 days at a time. There are over 20 different seizure types.
Riley has had as many as 220 seizures in one week; Riley has
bad days; Riley has good days. Each day that passes without a
cure limits Riley’s quality of life.
Our Testimony, Zachary’s Story (Posted 10/6/08, viewed
3/12/13). Below are excerpts from a long video narrated by
Zachary’s parents who were asked by their pastor to produce
this testimony for the grand opening of their church: Renee
and I had been married for about two years, when she got
pregnant. About 34 weeks in, her blood pressure started
acting up. . . They did a high tech ultrasound which measures
blood flow between baby and mother, and found that there
was reverse blood flow. The doctor said, “He has got to come
out now.” They took me back and performed an emergency
C-section, and he came out 3 pounds and 7 oz; he was unable
to breathe on his own and was having heart failure. . .When
he was about six months old, he started having these spasm
seizures. He would fly forward with his palms up above his
head. We got him to see a doctor right away. The neurologist
told us he had something called “infantile spasms” or “West
Syndrome,” which is a kind of infantile epilepsy. And he said
there is always some underlying cause, and so he ordered an
MRI. The MRI showed significant brain damage, and they
diagnosed him with cerebral palsy.... So the doctor said, that is
what is causing these seizures, now we have to get the seizures
under control. So we went through a process of medication,
and the seizures completely stopped. . . Having a special needs
child has brought us closer as a couple, closer as a family,
and has brought us closer to God. We are really amazed that
God can take something that is so devastating and he can give
someone purpose. And when he gives you direction, he says
“Here’s your direction, do something with this.” And it has
put us in a community of people who can say that they have
been there, and that there is this amazing, awesome God that
can carry you through it all. There are blessings that come
from trials and tribulations that you don’t really know about
until the storm has passed. And it is only through our light and
savior Jesus Christ that we can see how great those blessings
really are.
Epilepsy isn’t always peaches and cream
THE EPILEPSY REPORT JULY 2013
11
Epilepsy isn’t always peaches and cream (Posted 2/24/11,
Viewed 3/12/13). Banner: I decided to step out of my comfort
zone and record myself during a 24 EEG. Excerpt from a
voiceover. Hi everyone. I felt compelled to do another video
and I know typically my videos umm are in November for
epilepsy awareness month but today I really wanted to do one
because I know there’s another side to epilepsy that a lot of
people don’t realize. You know, I can sit there in front of a
camera and say, “You should do this” or “think positive” or do
whatever, but there’s still a lot of struggles and stresses that
people with epilepsy have. And I’m sure that everybody that is
on the Epilepsy Foundation website has gone through an eeg,
you know, mri, whatever and that’s exactly what I’m doing
today. It’s a 24 hour eeg, and I’m not ashamed or purposefully
covering myself up. I just literally wanted to show what most
of us go through. And, you know, I have my pirate scarf here
(she takes off her hat and scarf to reveal the electrodes). It’s
not pretty, you know, and I’m going out of my comfort zone in
doing this and that’s exactly why I’m doing it. So obviously
since I had all of that stuff on my head, it’s messy but, you
know, I had to have all of these on my head for 24 hours to
record my activity. And I have - all these probes and wires or
whatever you want to call them are connected to a battery pack
(she opens her shirt to reveal more sensors) that – I can press
a button if I feel a certain way – I’ve got these sensors for my
heart rate and heart beat and obviously this is a 180 difference
but this is what people who suffer from seizures or epilepsy
have to go through. And I just wanted to do a video because in
every video I did, I was lookin’ all pretty and happy but that’s
not always the case. And that’s ok because that’s what we have
to do to get through this and I’m willing to make a video while
I look ridiculous and upload it on the internet just because I
know that other people can relate to that. But it’s nothing to be
ashamed of and I’m probably even going to my brother’s party
later just to see how people are going to respond but I’m trying
to do things lately that are outside of my comfort zone so
obviously I don’t want to go out but that’s why I think I should.
It strengthens me and helps me deal with things. . .
Me and Epilepsy (Posted 1/8/11 viewed 2/9/11). The
following voice over material includes parts of a 14 minute
video whose plain background has the word ‘laugh’ printed in
a large, elegant font.
This is my first video ever, and my 5th time trying to make
an epilepsy video. It has to be perfect. Anyway, my name is
Tazia, and I was diagnosed with epilepsy at the age of 7, and
I’m 14 now. . . Anyways, epilepsy is not a commonly talked
about thing, but it is just as common as breast cancer. I think
most people out there thing epilepsy equals seizure, and
seizure equals grand mal seizure, and that’s half true and half
not true. Epilepsy usually equals seizure, and seizure equals
a lot of things. You have your absence seizures, you have
Postictal state – How
I look after having an
epileptic seizure.
12
THE EPILEPSY REPORT JULY 2013
your partial seizures you have your complex partial seizures,
you have your tonic seizures, you have your tonic clonic
seizures... I’ve gotten six bumps on my head before from
having a seizure in the bathroom, because you never know
when they’re going to come. You don’t have a little alarm on
you, it just comes whenever it feels like it. You could be the
smartest person in the world, you could be Einstein, and not
know when seizures are going to come, okay?... My friends
are always understanding about epilepsy, they are always so
supportive, and when I told them I might be getting the brain
surgery. They take out a tiny square, one centimeter by one
centimeter, of my brain that causes my seizures, and I should
not have any more seizures. But they may have to do it a few
times. But my friend, she was like, “Tazia, when you wake up,
I will be there waiting for you. And I was so happy I almost
cried... I am so lucky to have a friend like her, and her mom is
so supportive too... Epilepsy can make you feel alone at times,
it can make you feel sad; it can make you feel upset and angry;
it can make you have major headaches. I’ve had to cancel on
dates because I had seizures. I have had to go to the hospital
for an emergency. It’s not fun, it kind of sucks at times...
Epilepsy, people don’t know much about it. Me and my
mom did fundraising for epilepsy, I think we raised $800 for
epilepsy research. There’s only three kids who raised money...
I go on epilepsy.com, and they have chat rooms for kids and
adults who just want to talk to somebody who understands
what they are going through, and they also have stuff for
parents on there... They tell you about people being depressed,
I know I’ve been depressed from epilepsy before, and it hasn’t
always been happy for me, but it hasn’t always been terrible
for me either... Ever since I started using that, I’ve just felt
so much better, they have blogs on there you can read... It’s
pretty cool on there. I’m only 14, but my mom – I can see it
in her eyes that she stresses about me all the time. Epilepsy
is dangerous, but is not that bad. You can still be a perfectly
normal teenager. You just have to do things in a different way,
and take your medicine, talk to your doctor a lot and give them
updates, and you’ll be fine. Just remember, there is always a
light at the end of the tunnel, and it’s never going to be that
bad. It always gets better.
The downs of having epilepsy/seizures (Posted 1/12/11,
viewed 6/9/11) I just basically wanted to follow up with
my status – my epilepsy and seizures. My last neurologist
appointment, the doctor added – keppra to the dilantin... The
Keppra make me feel really really drowsy, just dizzy, just
really drugged up. And I don’t like it because I have to take
care of my daughter... I’m basically making this video because
I wanted to talk about my life with epilepsy and, you know, the
struggles that I face on a day-to-day basis. Life with epilepsy
for me has been really lonely because I find it running off
friends and boyfriends and just people in general. People will
Epilepsy and Me.
say it is not a problem in the beginning, and then, when they
are faced with the reality of a seizure or a couple of seizures
or stuff like that, it becomes a huge problem. Epilepsy is who
I am, it’s a part of me; there is nothing I can do about that...
People define me as “epilepsy.” That word “epilepsy,” they
feel like it makes me who I am. And that’s not true, I’m so
much more than an epileptic person... I’m just tired of feeling
the way I do. I feel so self-conscious about being an epileptic
person. I feel like now I need to hide it. I need to not tell
people. I don’t need to wear my medical ID bracelet because
as soon as people know, they look at you different. Deep down
inside, they think you are some kind of weirdo or some kind
of freak or something. It has been really hard for me because
all I want to be is what people call “normal.” I just want to
be accepted for who I am without having problems or being
judged by others. It really hurts me. It hurts me because I feel
like crap. I feel about this small because people don’t stop
being my friends due to my being mean or a bad friend or I
said something... Guys don’t stop being my boyfriend because
I cheated or something. It’s only because I have epilepsy and
they had to deal with a seizure now and again.
And I want to express that if I could choose not to have
epilepsy, I would do so. I wish that people would stop acting
as if this were something I chose for myself... Society and
people make me feel like it’s not ok to be this, to be an
epileptic person... I feel that every person should be accepted
for who they are, not made to feel ashamed and just want to
crawl into a hole and hide from the world because they have
something that they have no control over. I just wanted to talk
about that because if there is anybody out there who feels like
I do, I want to know them to know they are not alone and if
somebody wants to talk about it, you can leave me a comment
or message.
Epilepsy and Me. (Posted 9/9/09, viewed 3/12/13). This
almost 9 minute video contains embedded photos and a
voiceover narration. It was made by Jen, a teen with juvenile
myoclonic epilepsy, in her colorful and attractive bedroom.
She speaks with animation, warmth and a sense of humor.
During the video, Jen inserts several short videos of her
self-described “twitching” with one short insert showing her
putting on eye makeup, and photos of herself in the hospital
during an EEG.
Hi, I’m Jen. I’m 16 years old, I’m a sophomore in high
school, and I have epilepsy. I’m not the girl from the Blair
Witch Project. I don’t wrap my head around, do projectile
vomiting. I decided to record a video about epilepsy since it
affects my daily life I guess I could give a more human point
of view than “Dr. so-and-so,” and break it down normally. I
couldn’t really find any other videos about what I was going
through to kind of comfort me, I guess. So, this is going to be
my shot at it. This is going to be a long video, because I deal
with this everyday... I have juvenile myoclonic epilepsy, which
basically means I twitch. “(TXT on the screen). On a bad
day I have over 2,000 myoclonic seizures.” I have good days
and bad days... I have been in and out of the hospital. I had a
grand mal on Dec. 8, 2007. I missed a date for that. “Hey, I
can’t go on a date tonight, I’m in an ambulance.” Cool... I take
these little pills, called Keppra, twice a day, every day. Every
morning, I wake up and take a pill. It’s part of my life... I can
do everything normal kids can do, I horseback ride, I swim, I
eat and burp a lot..[burps for the video]... I’m very pro talking
about epilepsy... A lot of people are ashamed to be epileptic
or don’t want to tell people, and I understand that viewpoint.
Some people don’t respond well, and the questions can get
old, but if you don’t talk about it, who is going to talk about
it? They will just listen to the stigma. Exorcism, people keep
thinking that’s epilepsy, whatever they see on TV, like ER and
other shows. It’s not really like that... There are two ways of
looking at epilepsy, you can either laugh about it or cry about
it, I do a little bit of both, but I laugh about it more because
“Positivity is one of the greatest medications”. I read that on a
fortune cookie somewhere, but it’s so true because if you just
get in one mindset it will just take you down... So basically,
that’s me, that’s my life. If you look at me, nothing’s wrong
with me, but sometimes I have epilepsy, don’t be scared... This
is just a little insight, now you’re educated. “Thank you for
watching”.
Results
YouTube postings regarding epilepsy and/or seizures are
generally created by medical or advocacy organizations or
by individual posting personal information. In the personal
uploads, people post what they want an anonymous audience
to see and know about them. Many types of epilepsy are
included in the data set. Messages vary according to the
purpose; seizures are generally real (not fictionalized) and
are posted to show whoever is watching something about the
experience and/or to advocate for those with epilepsy.
Conclusions
On YouTube, representations of seizures and epilepsy only
occasionally appear to have the titillating purpose of most
depictions in film and on tv. Those posting want the audiences
to know their realities, their experiences with epilepsy.
Personal uploads are generally respectful, forthright, brave and
poignant. While it is thought that this level of personal posting
would be very uncomfortable for many people, the educational
contribution of these postings is enormous. This article
is not meant to push people to post any information about
themselves, families members or friends, but it does show the
great benefits of having people talk about themselves and how
they manage the symptoms of epilepsy. Through YouTube,
some people may have a way to gain control not of the illness
or its symptoms but of what they want an anonymous audience
to see if they are able to imbed message and context into their
videos. Overall, postings talk about epilepsy in ways that
should bring greater understanding and financial, emotional
and social support for those who have the condition and their
friends and relatives and for research and education. Thank
you for watching and for reading.
References
Abby’s seizure. (5/11/09). http://www.YouTube.com/watch?v=JrKbjUovVU.
Absence Seizure. (5/20/08). http://www.YouTube.com/
watch?v=YAJ8A1lwl.
Baxandale, S. (2003) Epilepsy at the movies: Possession to presidential
assassination. Lancet Neurology. 2: 764-770.
Baxandale, S. (2008). The representation of epilepsy in popular music.
Epilepsy & Behavior, 12:165-69.
Bryant, A. & Charmaz, K. (2010). The Sage handbook of grounded theory.
Thousand Oaks, CA: Sage.
Burgess, J. & Green, J. (2009). YouTube: Online video and participatory
culture. Malden, MA: Policy Press.
Chase 16 month old myoclonic.(11/6/08). http://www.YouTube.com/watch?
v=VC6HJPZr.
Continued on p21
THE EPILEPSY REPORT JULY 2013
13
Ode to Nonsense: Celebrating the
life and art of Edward Lear
An Appreciative Review of Slingsby Theatre’s “Ode to Nonsense” by
Jim Chambliss PhD Candidate (Creative Arts & Medicine), MA (Visual Arts), JD (Law)
S
eldom is it discussed that epilepsy
might have had a positive influence
in the creative writing and visual art of
Edward Lear (12 May 1812–29 January
1888) and other artists of his day, like
Lewis Carroll (1832–1898), Odilon
Redon (1840–1916) and Vincent van
Gogh (1853–1890). However, for the
first time, the Adelaide based theatre
company Slingsby and the State Opera
of South Australia presented a lavishly
entertaining opera about the life and art
of Edward Lear from 26 April to 4 May
2013.
“Ode to Nonsense,” the creation
of Slingsby’s director Andy Packer,
librettist Jane Goldney and composer
Quincy Grant shares with the utmost
charm, insight and humanity, the
life story of Edward Lear – the most
celebrated and admired of all “nonsense”
writers. Along with his writings, Edward
Lear is known for his artworks of birds,
nature and fictional characters. In 1846
Lear published A Book of Nonsense, a
volume of limericks that went through
three editions and helped popularise the
form. In 1865 The History of the Seven
Families of the Lake Pipple-Popple was
published. His most famous piece of
nonsense writing and drawings The Owl
and the Pussycat was published in 1867.
In a review in The Australian, Graham
Strahle wrote that the opera about
Edward Lear provides “a touching
account of what happens to the human
mind when pure nonsense takes over,
Ode to Nonsense ploughs new ground.”
“Ode to Nonsense” is the world’s first
opera or theatre production to present
how epilepsy could enhance creativity in
the written and visual expressions of a
famous artist.
After seeing the theatrical opera,
Samela Harris, from the Barefoot
Review, wrote:
“It may be the grandest grand mal
ever staged. Edward Lear convulses
on the stage before being raised high
in the air amid a shatter and scatter of
14
THE EPILEPSY REPORT JULY 2013
exploding stars. And, there he hangs,
limp and death-like in the spotlight until
he can resume his place in the normal
world. Not that the world was normal
for Edward Lear. He was the grand
master of the nonsensical as well as a
writer, traveler, and artist. Theory has it
that epilepsy was pivotal to his creative
impetus. Certainly it was bold and right
for Andy Packer’s Slingsby team to give
it dramatic focus in a production that
is simply not like anything else. Ode to
Nonsense is an opera for the family.”
Creative productions such as “Ode
to Nonsense” can help bring about a
positive change in the understanding
and acceptance of how society views
epilepsy and the people who have
it. Andy Packer was cautious and
respectful in the endeavor to ensure
that the account of how Edward Lear
lived with epilepsy would “not be used
gratuitously.” He interviewed Mark
Francis of the Epilepsy Centre, South
Australia, who shared, along with his
personal insights as an epilepsy service
provider, a collection of films depicting
seizures with the artistic director, actors
and the choreographer who envisioned
and portrayed Edward Lear having a
seizure in the opera. Mr. Francis – who
was present on the opening night –
described their portrayal of a seizure
and the hallucinations (or intrinsic
perceptions) that accompanied it, as a
“dance” that was “almost beautiful.”
He elaborated, “They worked hard to
authentically get the movement right
from the torso to the fingertips.” Mr.
Francis was also present, to answer
questions about epilepsy, following
several matinee performances for school
students.
Andy Packer conducted 12 years of
extensive research of the biographies,
writings, journals and artworks of
Edward Lear in order to understand how
to present his experiences with epilepsy
in an admirably empathetic, respectful
and authentic way. Lear wrote more
than ninety journals, in which he claims
to have written “about everything and
everybody.” He burnt an estimated 60
journals from the first half or his life
in 1840. He subsequently wrote thirty
volumes of journals from 1858–1887,
covering the second part of his life.
Within those journals he documented
his seizures, recording an X beside
a number as an apparent subjective
account of the severity or duration of a
seizure.
In order to genuinely portray the
visual aspects of how focal epilepsy
can trigger fascinating imaginings Mr.
Packer incorporated what he learned
from interviews with Jim Chambliss
and the visual art he gathered from
around the world of more than 100
contemporary artists living with
epilepsy, in order to genuinely portray
the visual aspects of how focal epilepsy
can trigger fascinating imaginings. The
works of these artists are exhibited in
the Creative Sparks Website at www.
artandepilepsy.com. Insightful review
of Lear’s journals, artworks and creative
writing, indicate that he most likely had
focal epilepsy, with a combination of
partial seizures, secondary generalised
seizures (simultaneous malfunction of
most of the brain, without conscious
memory of the event), unique epileptic
visual auras and interictal behavioral
changes, such as hypergraphia,
stickiness of behavior, and preoccupation
with fictional or other-worldly imagery.
Such indications are best represented by
Lear’s “nonsense” writing and art.
Mr. Packer was satisfied, and
subsequently affirmed, that audiences
had no concern about the inclusion of
a seizure in the production, nor the
contention that epilepsy influenced the
creative writing and art of Lear. He said
that several individuals with epilepsy
who were in the audiences were “very
pleased with the way epilepsy was
represented.”
It is only in the last decade that several
THE EPILEPSY REPORT JULY 2013
15
16
THE EPILEPSY REPORT JULY 2013
A long way to go:
Epilepsy care in China
Images courtesy of Slingsby Theatre
research studies by Georges
Ghacibeh and associates in
the USA and Jim Chambliss,
Mark Cook and associates in
Australia provided evidencedbased proof that focal epilepsy
could at times enhance creative
potential. The Chambliss/Cook
study, along with the production
of the Sparks of Creativity: Art
and Epilepsy Website and Art
Exhibition, was a joint venture
between the University of
Melbourne, St. Vincent’s Health
and the Epilepsy Foundation of
Victoria. To enable the study
of ‘if and how’ epilepsy could
enhance creativity, Epilepsy
Australia and most every
Australian epilepsy service
organisation, along with
organizations in Europe and the
USA assisted in the recruitment
of more than 100 artists with
epilepsy.
According to the research
of Chambliss/Cook Lear’s “nonsense”
writings and drawings reflect many
influences of the illusions and complex
hallucinations, often consistent with
epilepsy – or the use of hallucinogenic
substances – but rarely included in
the art of people who do not have
epilepsy, migraine auras, bipolar
disorder and a few other neurological
and/or psychological conditions. Lear’s
extraordinary attention to detail and
elaboration in his realistic paintings,
of birds and landscapes, are consistent
with hypergraphia, which is associated
with changes in between seizures
(interictal) for some people with
epilepsy. Hypergraphia is an intense
preoccupation with written and/or
visual expression producing remarkable
volume, emotional charge and/or
attention to detail.
Both the writing and art of Edward
Lear reveal noticeable traits and
characteristics that can help distinguish
epilepsy from the other conditions
listed above. Some of the more
common traits and characteristics of
the type of intrinsic imagery generated
by the sparks of epilepsy, that are
frequently represented in his work,
are the distortions of shapes, human
figures, combinations of human forms
with animals or plants, and complex
Nicholas Lester (Edward Lear), Johanna Allen (Gussie), Adam Goodburn (Giorgio)
hallucinations. An example of this is the
turkey playing marriage celebrant to an
owl and a pussycat as they dance by the
light of the moon.
Many in society, during the life of
Edward Lear, viewed seizures as a
sign of demon possession, witchcraft
or a curse. These attitudes increased
the isolation, depression and stigma
experienced by both people with
epilepsy and their families. Lear
suffered depression, which he referred to
as “the morbids.” Toward the latter part
his life that ended in 1888, at the age
of 76, the medical profession began to
recognize the impact of partial seizures
and auras arising from focal epilepsy.
Partial seizures – depending upon the
place of origin of the sudden surge of
electrical activity and the manner in
which it spreads – can influence how
a person feels, behaves and/or thinks.
Between 1870 and 1880 John Hughlings
Jackson, often referred to as the father
of modern neurology, labeled partial
auras and/or seizures as the “dreamy
state,” “intellectual aura,” and “double
consciousness.” He theorized that partial
epilepsy caused predictable behaviors
that were linked to the location of
scarred brain tissue. He recognised
that symptoms of partial seizures were
uniquely recurrent among individuals
and that epilepsy sometimes led to
increased artistic expression.
Yet, very few people followed up on
his reflection that the electrical mischief
of epilepsy could enhance creativity.
Through electrical stimulation of parts
of the brain, medical scientists over the
following decades, confirmed Hughlings
Jackson’s theories and documented
the evidence that direct electrical
stimulation of the brain cortex led to
various forced memories, hallucinations,
physical reactions, and behaviors,
depending on which section of the brain
was stimulated.
Lear’s self-description in verse, How
Pleasant to know Mr. Lear, ends with
this stanza, a reference to his own
mortality:
He reads but he cannot speak Spanish,
He cannot abide ginger-beer;
Ere the days of his pilgrimage vanish,
How pleasant to know Mr. Lear!
It is admirable and appreciated that
Slingsby and the State Opera of South
Australia are now – 125 years after his
death – helping people better know
Edward Lear, his experiences with
epilepsy and how the electrical mischief
of epilepsy can spark creative images
and stories that have entertained people
for a century and beyond.
Report by Ding Ding and Schichu Li, China Association Against Epilepsy CAAE
Photo: father and daughter, rural China
C
hina, the second largest economy in
the world, remains a low-and-middleincome country (LAMIC) in World Bank
terms due to its huge population. Of the
1.3 billion people living in China, about 9
million have epilepsy, of which 6 million
have active epilepsy. In addition, a further
400,000 new cases are diagnosed each
year. Unfortunately, 65% of these patients
receive no treatment; while others are
inadequately treated due to deficiencies in
health-care resources and delivery.
Epilepsy brings a heavy burden to
people with epilepsy and their families
economically, psychologically and, also,
socially.
Since the establishment of China
Association Against Epilepsy (CAAE)
in 2005, the scientific and psycho-social
treatment of people with epilepsy in
China has been improving rapidly and the
disease has been receiving more and more
attention both from the government and the
public.
As part of the Global Campaign
Against Epilepsy, and under the auspices
of the World Health Organization and
the Ministry of Health of China, a
demonstration project was implemented
from 2000 to 2004 in rural China.
An intervention trial was undertaken in
8 rural counties in 6 provinces, covering
a population of 3 million people. This
project was expanded to 135 counties
in 18 provinces at the end of 2012,
covering 74.95 million people in rural the
population. A total of 135,764 people with
epilepsy were screened under this project;
74,862 were treated with Phenobarbital
and 8,020 with Valproic acid, free of
charge. After treatment, about 25% of
people with epilepsy were seizure-free
and the condition of a further 45% had
improved. This is also a good experience
for LAMICs.
Meanwhile the CAAE organized a
number of activities to eliminate social
discrimination and prejudice against
people with epilepsy, to safeguard their
lawful rights, and to increase their
knowledge on epilepsy.
In July 2007, the self-help “Seahorse
Club” of people with epilepsy was founded
in Shanghai, under the Patients Self-help
Cluster of CAAE. The Club held group
meetings for people with epilepsy, invited
experts in epileptology to deliver lectures
Of the 1.3 billion
people living in China,
about 9 million have
epilepsy
on epilepsy, and provided free medical
consultations.
Since late 2007, the Club has conducted
a series of “art and epilepsy” activities,
such as art competitions and handcraft
making courses, both for people with
epilepsy and for their carers, in order to
improve their capabilities.
In 2010, the Club established the Selfhelp Art Studio for people with epilepsy,
with the support of IBE’s Promising
Strategies Program. The artworks were
exhibited and published as calendars, book
covers, greeting cards, and albums.
However, there are still challenges to
be faced in the next decade in China in
respect of patient care.
The diagnosis and treatment skills
of primary care physicians are heavily
lacking, and people with epilepsy
themselves do not have other resources to
access epilepsy knowledge. Some people
with epilepsy have poor adherence to
standardized treatment with anti-epileptic
drugs (AEDs), and monitor plasma
concentration and adverse events regularly.
Most people with epilepsy think that it
is inconvenient to see doctors because of
long waiting times and traffic problems.
Another main reason is that they worry
about recurrent seizures and medical costs.
The key problem is not the gap between
provinces, but the gap between urban and
rural areas. For people with epilepsy living
in urban areas, accessing efficient AEDs
is their most important requirement, while
for those living in rural areas, accurate
diagnosis and cheap AEDs are their
basic needs. Thus, the goal of epilepsy
management is to ensure that people with
epilepsy remain as free from seizures as
possible with efficient but cheap AEDs
and with treatment side effects minimized.
To achieve this goal, training of primary
care physicians to improve diagnosis and
treatment skills is a first priority.
Epilepsy has been in a culturally
challenging condition throughout Chinese
history. People with epilepsy receive
unfair treatment or face discrimination,
and often experience severe mental stress
due to stigma. Most are reluctant to open
themselves to education, employment
and marriage, mostly due to a lack of
relevant epilepsy knowledge and the
negative impacts of traditional customs
or superstitious ideas. Therefore, public
education on epilepsy should be as
important as the care of people with
epilepsy themselves. It requires us to make
strategic plans in terms of subgroups of the
population, for example, children, students,
teachers, farmers, doctors, social workers,
etc. This is a tough task that needs our
continuous and long-term efforts.
Finally, to quote a very favour Chinese
proverb: “a journey of a thousand miles
begins with single step”. We believe that
epilepsy care in China will improve with
the contributions and efforts of all related
domestic and international organizations,
institutions and warm-hearted people.
People with epilepsy should and could
enjoy their life in China!
THE EPILEPSY REPORT JULY 2013
17
Why consider the
Modified Atkins Diet
for the treatment of
refractory epilepsy
Yvette McMurtrie
Client Services Coordinator
Epilepsy Queensland, Brisbane, Australia
T
he majority of people with
epilepsy become seizure free
with antiepileptic medications, but
approximately 20-30% will have
refractory epilepsy, for which seizures
persist despite accurate diagnosis and
carefully monitored treatment (Berg et
al., 2001). The Ketogenic Diet (KD) was
originally developed in the USA in the
early 1920s and has recently become
increasingly accepted internationally. It
is considered an important alternative to
drug therapy for children with medically
intractable seizures (Freeman et al.,
2007). The KD, however, remains
restrictive and prescriptive, requiring
careful monitoring by a dietician. Use
in adults has been attempted but in view
of its restrictions has been extremely
difficult and has been noted that even
when a benefit is seen, adults are not
able to continue with the KD in the
immediate term (Cross, 2010).
The Modified Atkins Diet (MAD)
has been used to treat intractable
or refractory epilepsy since 2003
(Kossoff et al., 2008) and the results
are promising. An average of 56% of
patients experienced greater than 50%
seizure reduction and an average of 16%
of patients experienced greater than 90%
seizure reduction. This demonstrates
that the MAD is remarkably similar to
the KD in effectiveness. The MAD is
also generally thought to be easier to
stick to and have fewer side effects than
the KD (Cervenka et al., 2012).
The MAD was created at the John
Hopkins hospital in an attempt to create
a more palatable and less restrictive
dietary treatment. The MAD induces
ketosis without fluid, energy or protein
restriction (Kossoff et al., 2010). The
MAD can be initiated in an out-patient
setting and is possibly suitable for both
children and adults.
So how do the diets differ? Essentially
both the KD and MAD are high fat
diets with very little energy coming
from carbohydrate. On the MAD,
daily carbohydrates are limited initially
to 10g/ day in children with planned
increase after one month to 15g, then
20-30 g as tolerated based on seizure
control. Adults are started on 15 g/day
and can be increased to 20-30g/day
after one month. A high fat intake is
encouraged. Unlike the KD, however,
fasting or food weighing is not required.
Calories and fluids are also not restricted
on MAD the way they are on KD. The
ratios of energy coming from different
nutrients in the Ketogenic and Modified
Atkins Diets are outlined in figure 1.
Research does indicate that the diet
is most effective in Doose, Dravet
and West syndrome (Oguni et al.,
2002; Caraballo et al.,2005; Kossoff
et al., 2008). In these syndromes diet
therapy could possibly be considered
earlier in the management rather than
later. Kossoff et al., (2010) found that
children with Doose (Myoclonic Astatic
Epilepsy) had an almost 100% responder
rate with more that 90% reduction in
seizures. There have not, however,
been many studies in adults with other
syndromes and thus the diet may be just
as effective in these.
Patients on the MAD experience fewer
serious side effects than on the KD.
Most of the side effects were manageable
and patients were more likely to be
able to tolerate being on the diet for a
longer period. The MAD is generally
considered less restrictive on lifestyle
(Kossoff et al, 2010). There are no
studies to date, however, that examine
the long term side effects of the MAD.
Similar to the KD, families and adults
alike on MAD report not only seizure
reduction as a beneficial side effect of
the diet but also improved concentration,
Figure 1. Diet compositions: ratio, grams of fat, protein and carbohydrate. (Epilepsia © ILAE)
Typical Western
Diet
18
Traditional
Ketogenic Diet
Modified Atkins
Diet
Fat
Fat
Fat
Protein
Protein
Protein
Carbohydrate
Carbohydrate
Carbohydrate
THE EPILEPSY REPORT JULY 2013
alertness and behaviour (Weber et al.,
2009) and this is before medications
were reduced. Weber also found that
children were more awake during the
day and slept better at night.
Independent from its effect on seizure
frequency and severity, MAD may also
be beneficial in patients with clinical
obesity or those desiring weight loss
(Smith et al.,2011). Some adult patients
on MAD experienced adverse side
effects of elevated LDL cholesterol
levels. However, Cervenka et al.(2012)
found that on carnitine supplements,
combined with dietary counselling
to avoid saturated fat and increase
consumption of unsaturated fat, the
levels of LDL and total cholesterol
returned to normal.
It is essential to note though that
References
Barzegar M., Irandoust P., Ebrahimi
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Neurology. Vol 4 (3). pp. 15 – 20.
Berg A., Shinnar S., Levy S., Testa F.,
Smith-Rapaport S., Beckerman B. (2001) Early
development of intractable epilepsy in children: a
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Bergqvist AGC, Schall JI, Stallings VA, Zemel
BS. (2008) Progressive bone mineral content loss
in children with intractable epilepsy treated with
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Bodenant M., Moreau C., Sejourne C., Auvin
S., Delval A., Cuisset J. (2008) Interest of the
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Carrette E., Vonck K., De Herdt V., Dewaele
I., Raedt R., Goossens L., Van Zandijcke M.,
Wadman W., Thadani V., Boon P. (2008) A Pilot
Trial with Modified Atkins’ Diet in Adult Patients
with Refractory Epilepsy. Clinical Neurology and
Neurosurgery. Vol 110. pp. 797 – 803.
Cervenka M., Terao N., Bosarge J., Henry B.,
Klees A., Morrison P., Kossoff E. (2012) E-mail
Management of the Modified Atkins Diet for
Adults with Epilepsy is Feasible and Effective.
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Cross J. H. (2010) Dietary Therapies – An Old
Idea With a New Lease of Life. Seizure. Vol 19.
pp. 671 – 674.
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Dutton S., Escayg A. (2008) Genetic Influences
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Hartman A., Vining E. (2007) Clinical Aspects
of the Ketogenic Diet. Epilepsia. Vol 48 (1). pp.
31 – 42.
Jung D, Kang H, Kim H. (2008) Long-term
outcome of the ketogenic diet for childhood
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cortical development. Pediatrics, Vol 122:330-3.
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Kim H. (2007) Use of a Modified Atkins Diet in
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neither the MAD nor KD can be
considered a ‘natural treatment’. They
have side effects like any medication.
Further, the KD requires a high level of
dietary supervision, commitment and
resources, the MAD less so, but still a
challenge. Although a varied diet can be
provided within the requirements, both
are still very limiting on lifestyle. For
this reason dietary therapy should only
be considered for drug resistant epilepsy,
that is, after two appropriate medications
have failed and only undertaken with
strict medical supervision (Cross, 2010).
Response (or seizure reduction)
to the diet at three months predicted
the response to the diet at 12 months
for most patients (Smith et al.,2011).
Therefore a three month trial of MAD
may be sufficient to determine whether
or not it is an efficacious and sustainable
therapy.
Even though results for MAD and
the KD are good, very few patients
achieve complete long term seizure
freedom. Treatment is also ongoing and
requires a sustained commitment. An
additional drawback of dietary therapy
in both adults and children is the lack
of dietician expertise and perceived
complicated nature of using the diet by
the average neurologist without KD and
MAD experience (Kossoff & Doward,
2008). Despite increasing evidence of
efficacy and an increasing awareness
amongst families, there is still a lack of
choice for either the family or the health
professional owing to a lack of resources
required. Waiting lists for MAD or KD
services are long.
Kessler S., Neal E., Camfield C., Kossoff E.
(2011) Dietary Therapies for Epilepsy. Epilepsy &
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Kim Y., Vaidya V., Khusainov T., Kim H.,
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Sirven J., Whedon B., Caplan D., Liporace J.,
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Ketogenic Diet for Intractable Epilepsy in Adults:
Preliminary Results. Epilepsia. Vol 40 (12). pp.
1721 – 1726.
Smith M., Politzer N., MacGarvie D.,
McAndrews M., Del Campo M. (2011) Efficacy
and Tolerability of the Modified Atkins Diet
in Adults with Pharmacoresistant Epilepsy: A
Prospective Observational Study. Epilepsia. Vol
52 (4). pp. 775 – 780.
Vining E. P. G. (2008) Long-term Health
Consequences of Epilepsy Diet Treatments.
Epilepsia. Vol 49 (8). pp. 27 – 29.
Weber S., Molgaard C., Taudorf K., Uldall
P. (2009) Modified Atkins Diet to Children and
Adolescents with Medical Intractable Epilepsy.
Seizure. Vol 18. pp. 237 – 240.
Wheless J. (2004) Nonpharmacologic
Treatment of the Catastrophic Epilepsies of
Childhood. Epilepsia. Vol 45 (5). pp. 17 – 22.
Wheless J. (2008) History of the Ketogenic
Diet. Epilepsia. Vol 49 (8). pp. 3 – 5.
THE EPILEPSY REPORT JULY 2013
19
Epilepsy and genetics:
things you want to know
Genetics Commission, International League Against Epilepsy
What is genetics?
Genetics is the study of genes and inheritance. It studies how
parents pass on to their children different characteristics or
traits.
Every person inherits half of their genes from the mother
and the other half from the father. Still, everyone is unique
in a variety of traits, such as height, eye color, health or
disease. Therefore, children are in many ways similar but not
identical to their parents or their siblings. Most of our traits are
determined by a combination of genes and environment (e.g.,
body weight is caused by genetics and lifestyle).
What is the basis of my genetic make up?
Human cells contain structures called chromosomes (see
Figure 1A). Chromosomes are thread-like structures that
package our genetic information. The genes are lined up on the
chromosomes, like beads on a string.
Figure 1A - Human genetic makeup
What is a genetic mutation?
Cell
➞
Chromosomes
Human
➞
Figure 2 - DNA, genetic code and
The order (or
making of a humann protein
“sequence”) of these
bases (GCT, GAT,
TTT, etc.) makes up
our genetic code, which
provides the information
needed to make proteins,
large molecules that are
important for proper
structure and function of
a human body. Proteins are made up of amino acids, and each
3-base unit of DNA determines the specific amino acid that
will be included in the protein. A gene is a unit containing a
blueprint for making a specific protein. There are about 20,000
genes packed in each parental chromosome set (23 pairs of
chromosomes).
➞
Chromosome
DNA
Each person has 23 pairs of chromosomes. One member
of each pair comes from the mother and the other from
the father. In Figure 1A, pink bars represent chromosomes
that are inherited from the mother and black bars represent
chromosomes inherited from the father. One of the 23
chromosome pairs is special because it determines sex – males
have an X and a Y chromosome, and females have two X
chromosomes. In Figure 1B, pink and blue bars represent sex
chromosomes X and Y. Males inherit an X chromosome from
their mother and a Y chromosome from their father. Females
inherit an X chromosome from their mother and another X
chromosome from their father.
A gene mutation is a permanent change in the DNA sequence
of a gene that leads to problems with the gene’s protein product.
There are many different kinds of mutations, ranging from
a change in a single base (A, T, C, or G) or a few bases (Fig.
3A), to much larger changes involving extra or missing pieces
of genetic material that could include several genes or even a
whole chromosome (Fig. 3B).
Gene mutations occur in two ways: they can be inherited
from a parent (hereditary mutations) or occur for the first time
in a person (de novo mutations).
Figure 3. Examples of genetic changes that can predispose to disease
such as epilepsy
however, many people develop epilepsy, consistent with an
effect of a mutation in a single gene with a strong effect on risk
in the family.
Studies of these rare families have been very informative for
identifying genes that cause epilepsy.
I am pregnant and I have epilepsy. Is my
child going to have seizures, too?
Certain epilepsy types do seem to run in families. However,
for most people with epilepsy, the amount of increased risk
appears to be modest.
The risk of epilepsy in the close relatives (parents, offspring,
and brothers and sisters) of people with epilepsy is about
two to four times higher than that of people in the general
population, depending on the type of epilepsy. The risk is
higher in the relatives of a person with generalized epilepsy
than in the relatives of a person with focal epilepsy. Studies
suggest that, except in some unusual cases, the chance is less
than 1 in 10 that a child of a person with epilepsy will also
develop epilepsy.
How can I find out about the risk of epilepsy
for myself or my children?
Genetic testing is available for several known epilepsy
genes. Genetic counseling is an important part of the testing
process. Talk to your neurologist or an epilepsy specialist
about a referral to a genetic counselor. You will meet with a
specially trained health care professional who will review in
detail your medical and family history.
He or she may recommend additional laboratory and/
or genetic testing and will calculate the risk of developing
epilepsy within your family.
How can I participate in a research study on
epilepsy?
Genes play an important role in epilepsy. Still, in the
majority of patients, the exact genetic mechanisms or causes
have not been identified. Participation in research studies on
genetic mechanisms of epilepsy is critical for improving our
knowledge and ability to diagnose disease, predict who will or
will not develop epilepsy, and develop better treatments.
There are many studies in epilepsy genetics or epilepsy
mechanisms conducted locally, nationally, and internationally.
This article is provided as a public educational service by the Genetics
Commission of the International League Against Epilepsy, 2013
http://www.ilae.org/Visitors/Centre/documents/
GeneticsPamphlet-2013.pdf
Figure 1B
The Epilepsy Genetics Group
Researchers from The Epilepsy Research Centre, Melbourne,
Is epilepsy a genetic disorder?
XY
XY
XX
XX
The most important component of chromosomes is DNA
(deoxyribonucleic acid), a long molecule shaped like a twisted
ladder, or double-helix (Fig. 1A).
The DNA molecule is made up of substances (“bases”) called
G, C, T, and A.
20
THE EPILEPSY REPORT JULY 2013
Genetics is believed to play a role in most forms of epilepsy.
However, perhaps surprisingly, most people with epilepsy do
not have any affected relatives.
Current scientific evidence suggests that the role of genetics
in epilepsy is complex – many genes with a small or modest
effect on risk are likely involved – so that it is difficult to
predict which people are at high risk. In some unusual families,
together with collaborators at the Women’s & Children’s
Hospital and University of South Australia in Adelaide, and at
the Walter and Eliza Hall Institute in Parkville, are international
leaders in the genetics of epilepsy. By 2011, 12000 people
have participated in or signed up for their research studies.
To learn more about the work of the Epilepsy Genetics
Group and how you may participate visit:
http://www.brain.org.au/epilepsyresearch/research_
Continued from p12.
Epilepsy and me. (9/0/09, viewed 6/22/11). Retrieved from: http://www.
YouTube.com/watch?v=Pa1wWCz.
Epilepsy Foundation. (2011). Retrieved from http://www.
epilepsyfoundation.ning.com/group/talkaboutit.
Epilepsy isn’t always peaches and cream. Posted 2/24/11, Viewed 3/12/13).
Retrieved from:http://youtube.com//watch?v=Wb9YM1KIjZk
Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics.
Chicago, IL: The University of Chicago Press.
Google buys YouTube for $1.65 Billion (10/10/06). Retrieved from http://
www.msnbc,msn.com/id/15196982/n5/business-us_business/
Hand, M. (2008). Making digital cultures: Access, Interactivity and
authenticity. Aldershot, UK: Ashgate Publishers.
Jenkins, H. (2006). Convergence culture: Where old and new media
collide. NY: New York University Press.
Jenkins, H. (2009). What happened before video. In Burgess, J. & Green,
J. (Eds.). YouTube: Online video and participatory culture (pp. 109-124).
Malden, MA: Policy Press.
Kerson, J. F., Kerson, T.S., & Kerson, L.A. (1999). The depiction of
seizures in film. Epilepsia, 40, 1163-67.
Kerson, T.S. (2010). Epilepsy and Media. In Pinikahana, J. & Walker, C.
Social epileptology: Understanding the social aspects of epilepsy (pp. 231263). New York: Nova Science Publishers.
Kerson, T.S. (2012). Epilepsy postings on YouTube: Exercising individuals’
and organizations’ right to appear. Social Work in Health Care 51: 927-943.
Kerson T. S, Kerson J. F., & Kerson L. A. (2000). She’ll have a seizure
maybe: Then we can watch. Social Work in Health Care 30, 95-110.
Kerson, T.S. & Kerson, L.A. (2007). Implacable images: Why epileptiform
events continue to be featured in film and television Epileptic Disorders.
8(2),1-11
Kerson, T.S. & L.A. Kerson (2008). Truly enthralling: Epileptiform events
in film and on television - Why they persist and what we can do about them.
Social Work in Health Care 47(3), 320-337.
Lange, P. G. (2010). Videos of Affinity on YouTube. In P. Snickars, & P.
Vonderau, P. (Eds.). The YouTube Reader (pp. 70-88). Stockholm, Sweden:
National Library of Sweden.
Lewis having a seizure. Posted 5/19/08, cited 6/6/10). http://www.YouTube.
com/watch?v=dQJXVmk9nsk
Lo, A.S., Esser, M.J., & Gordon, K. E. (2010).YouTube: A gauge of public
perception and awareness surrounding epilepsy. Epilepsy & Behavior 17,541545.
McBride, M. (2003). In my daughter’s eyes. Martina. RCA Nashville.
Me and epilepsy (Posted 1/8/11, viewed 2/19/11). Retrieved from: http://www.YouTube.com/watch?v=9BENuR-vqpQ
Moeller, A. D., Moeller, J.J., Rahey, S. R., & Sadler, M. (2010). Depictions
of seizure first aid management in medical television dramas. Abstract.
Neurology 74:2: A107.
More than One billion users will view online video in 2013 (5/27/08).
Allied Business Intelligence. Retrieved from http://www.alliedworld.com.
Myoclonic? Apparently . . . (Posted 11/6/08). http://www.YouTube.com/
watch?v=C8QAg-wdl-s&feature=related.
My Epilepsy Vids2 (Posted 3/6/09, Viewed 7/2/10). http://www.YouTube.
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viewed 6/8/10). Retrieved from: http://www.YouTube.com/watch?v=L5JU78VeEI&feature=related
Postictal state – how I look after having an epileptic seizure. Posted
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watch?v=RIQPW1U1InE
Quantcase.com (2010). Retrieved from www.quantcase.com/YouTube.com
Radner, G. (1989). It’s always something. NY: Simon and Schuster.
Riley’s Journey with epilepsy (4/11/2008, cited 6/6/2010). Retrieved from:
http://www.YouTube.com/watch?v=bcn021oiREI
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Vonderau, P. (Eds.). (pp. 40-59). The YouTube Reader. Stockholm, Sweden:
National Library of Sweden.
YouTube. (2010). Retrieved from: http://www.YouTube.com.
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programs/genetics/index.htm
THE EPILEPSY REPORT JULY 2013
21
CONSUMER UPDATE
face2face
Personally Controlled Electronic
Health Record (PCEHR)
O
It’s 3am and your GP is closed.
We’re open.
Alliance newsletter in Feb 2013.
P
eople who require after hours
medical advice, who cannot access
intended for people with life-threatening
their usual GP and are not sure what
conditions. People with such conditions
they should do, can now speak to a GP
should dial ‘000’ and/or attend an
over Athe
when Government
necessary.
emergency
joint telephone,
initiative of the Australian
and state and territory
governments.department without delay.
GP helpline is also available through the Queensland Government’s 13 HEALTH service and the Victorian Government’s NURSE-ON-CALL service.
The after hours GP helpline is
The after hours GP helpline
All information in this publication is correct as at April 2012.
accessible during the after hours period
is available nationally by calling
from 6pm to 8am Monday to Friday,
healthdirect Australia on 1800 022 222.
6pm Friday to 8am Saturday, from 12
For people living in Tasmania, access
noon Saturday to 8am Monday, and all
to after hours GP telephone advice is
day on public holidays.
available through GP Assist by calling
The after hours GP helpline is not
1300 780 011.
Fundraising is the life blood of all charities, large or small, and
fundraisers are those exceptional people that work hard to
raise the money, commitment and enthusiasm that’s needed to
allow the organisation to deliver its aims and goals.
My Child’s eHealth
Mobile App
The my child’s eHealth record app is
for Australian healthcare consumers
with children under the age of
14 years. It allows parents and
authorised representatives to access
the child’s eHealth record add and
view information about the child’s
development. After 14 years of age,
the child’s records may be accessed
via the eHealth website.
This app is not a replacement for
your current child health records.
Pre-Requisites:
➡➡ a child eHealth record. You
need to register your child at ehealth.
gov.au. Do this from a computer (you
cannot register from a mobile phone)
➡➡ a myGov account to access
the Government’s online services.
Use your myGov username and
password to access the child’s
eHealth record.
If you have previously registered
to access your Government online
services through australia.gov.au
you will need to convert your account
to a myGov account and accept the
myGov terms and conditions.
You can do this by visiting my.gov.
au and logging in using your existing
australia.gov.au username and
password.
The mobile app is available for
Android and Apple smartphones,
and can be downloaded from Google
Play and the Apple App Store.
17/04/12 5:02 PM
22
THE EPILEPSY REPORT JULY 2013
Ref: http://www.ehealth.gov.au/
internet/ehealth/publishing.nsf/
Content/mobile
“
In this issue we meet Epilepsy Queensland’s inspiring
Fundraising & PR Manager, Leigh Gilbert.
It has been nearly 5 years since I
commenced working with Epilepsy
Queensland. After 19 years working
with the Returned & Services League
of Australia (Queensland Branch),
in fundraising roles that included
coordinating the annual Poppy Appeal,
it was time to move on. A difficult
decision at the time as the RSL, staff
and the wonderful veterans I had the
privilege of working for and with, had
always played such a huge part in my
life. It is a cause still very close to my
heart as my 93 year old father was a
former WWII Prisoner of War. Dad
and I shared a unique relationship of
working closely together (he was State
Vice President) over the years and we
have many friends (both young and
old) in common to this day.
However, from day one at Epilepsy
Queensland I realised that this was
going to be a completely different
fundraising role and one that I would
come to love as much as the RSL – just
in different ways. After only being
there for one month I was diagnosed
with breast cancer on Christmas
Eve, and couldn’t have asked for
more support and understanding
than I received from my CEO Helen
Whitehead and the wonderful team
I worked with. I knew then that the
decision to leave the RSL was the
right one – being a firm believer in
everything happens for a reason.
Whilst still undergoing treatment, I
heard about Purple Day for Epilepsy
which commenced the year prior in
Canada. It was only 3 weeks away
from 26 March, but we decided to
still join the campaign and proudly
became the first official Australian
partner. The media jumped onto
it as did many of our clients and
supporters. My previous experience
with the Poppy Appeal certainly
helped to know how to start getting
people involved and raise some money
along the way. There was no time
to get any merchandise made so it
became very therapeutic following my
chemo treatment to hand make purple
ribbons which sold out. That first year
we raised just $7,000 but last year
surpassed our target and hit a record of
$110,000!
I cannot be happier that Purple
Day is now Australia wide and that
each Epilepsy Australia state based
organisation is also enjoying the
benefits of both fund and awareness
raising. I really enjoy my involvement
with the other state organizations
and sharing ideas and merchandise.
It often still brings tears to my eyes
when I hear how Purple Day has made
a different to someone with epilepsy
life – being either a school student who
proudly stands in front of their class
and talks of their epilepsy for the first
time or those who join in Epilepsy
Queensland’s Purple Procession
through Southbank to watch the city
skyline turn purple.
During my time at Epilepsy
Queensland I have enjoyed getting to
know our wonderful volunteers and
supporters through community and
corporate fundraising events. Many of
these volunteers and supporters have
epilepsy or have a family member with
the condition. This makes my role
of raising both funds and awareness
of epilepsy so much more personal
for me, as I had very limited prior
knowledge of epilepsy. I have learnt so
much more about the effects epilepsy
has on people and families through
my new friends and also our Facebook
pages where I have ‘met’ some lovely
people throughout the world including
the inspirational young Cassidy Megan
who founded Purple Day and her
family.
Although the team at Epilepsy
Queensland is small, it is a terrific
team to be a part of, as my colleagues
are all very passionate about our
organisation and helping people with
epilepsy. It’s a great place to work!
If I could have a wish it would
be that ‘purple’ is the new ‘pink’!
Although I consider myself fortunate
to have survived the first 5 years
without any reoccurrence from
the dreaded breast cancer, I find it
frustrating to see how much money
and support the many breast cancer
charities receive. It’s the smaller
organizations such as those supporting
people with epilepsy that desperately
need the funds and awareness. I
believe that Purple Day will make a
difference, and in time give people
with epilepsy a voice that will be heard
and I hope to be there a long time to
come, shouting it out too!
“
personal notes about your health and
emergency contacts.
When a healthcare provider has
access they can see information about
your medical history, any allergies to
medicines, adverse reactions and a list
of what medicines you are currently
taking. You might want to include your
wishes about organ and tissue donation.
This helps them make better decisions
about your health and treatment advice.
The PCEHR is not a full medical record
but more a summary of important
information. The only time a healthcare
professional can have access without
permission is in a medical emergency
such as following a car accident.
There are teething problems with the
PCEHR and these are being worked
through. Already there are some 127,000
people who have registered. In the
case of our scenario above we can see
the immediate advantages especially
as it will be accessible from mobile
devices. For seriously ill people who
access several healthcare professionals
in the course of their care we know
that ensuring accurate and consistent
information can be daunting. Having
access to one’s own list of prescribed
medicines in itself is a huge advantage.
What could help?
The PCEHR just might be the answer to
Enter the PCEHR. This is a secure,
many different problems.
electronic record of your medical
If you wish to find out more you can
history, stored and shared in a network
contact your local Medicare office or
of connected systems. You are in control
telephone the eHealth helpline on 1800
of the information in a PCEHR as well
723 471. For those wishing to register go
as being in control of who can access
nt health concern and don’t know what to do, call the after hours GP to
helpline
– for free health information and assistance
www.ehealth.gov.au
it. A health professional can only have
rse, or medical advice from a GP if you need it. The after hours GP helpline is open when your GP may not be – at nights,
Note: this article is an adaptation of an
access if you give permission. You can
n public holidays – 365 days a year. If you don’t know what to do, thearticle
after hours
helpline will
the reassurance
thatGPappeared
in give
the you
Chronic
Illness
also add your own information such as
you need.
ne of the features of epilepsy is that
it is often unpredictable. Just when
a person is feeling confident that they
can resume normal activities might just
be the time when a seizure happens. For
many people that unpredictability leads
to social isolation and sometimes being
housebound. The Personally Controlled
Electronic Health Record may well be a
huge benefit to people with epilepsy and
their families, opening the way to having
more confidence and mobility.
Here’s scenario to explain how it could
help. Imagine that you and your partner
have decided to take that long-awaited
trip around Australia. You set off after
months of preparation. Your epilepsy is
controlled, you have your prescriptions
with you and you both feel great. Weeks
later, in the middle of nowhere, you
become ill. It might not even be due to
epilepsy but you both want to consult a
health professional. This entails a long
drive to a small remote community
health centre. You are desperate for help
but the first thing the staff want to know
is your medical history. You aren’t up to
answering and your partner is looking
vague. There’s going to be valuable time
lost in phoning your regular GP.
THE EPILEPSY REPORT JULY 2013
23
Celebrating Purple Day 2013
24
THE EPILEPSY REPORT JULY 2013