Epilepsy News
Shining a light on epilepsy
Epilepsy Ireland Issue 70 Autumn 2015
In This Issue:
• New publications & children’s colouring
book
• Story: How horses helped my epilepsy
• Medication update: Valproate & Lyrica
• Can teenagers be trusted to take their
medication?
contents
Note from the editor
3. News Update
Another busy summer draws to a close
and preparations are stepping up a
pace for the big event of the year, the
National Conference 2015. This year
we travel to Killarney, conference date
Saturday October 3rd. It promises to be an
outstanding event with a wonderful line
up of speakers and workshops. Full details
can be found on the back cover. For other
upcoming events in your region please
check out page 14.
4. Yay or Nay - Can Teenagers
Be Trusted to Take Their
Medication?
5. Valproate & Lyrica updates
6. Personal Story by Aileen
Gardiner
8. New Publications
10. How horses helped my
epilepsy by Laura Hall
We would also draw your attention to
page 8 – 9 which has full details of three
11. Epilepsy Ireland Fun Day
12. Fundraising
new Epilepsy Ireland publications, which
we are sure you will find both informative
and useful.
This issue contains two personal stories –
Aileen Gardiner shares her experience of
epilepsy surgery (page 6 -7) while Laura
Hall shares her very personal experience
working with horses (page 10). We hope
you enjoy them both and find some
inspiration.
We are looking forward to seeing you in
Killarney in October.
2015 John Kirker Prize Winner
14. Regional Events
From left to right Mr. Donncha
O’Brien, Consultant Neurosurgeon,
Beaumont Hospital and Children’s
University Hospital, Temple Street,
who specialises in epilepsy surgery;
Dr. Mark McCormack, John Kirker
Prize Winner 2015; Dr. Ronan
Kilbride, Consultant in Clinical
Neurophysiology and Epileptologist,
Beaumont and Mater Hospitals,
Dublin.
Front cover inage:
Lacey Ellison from Dublin, enjoying
our new educational colouring
book for children whose parent has
epilepsy.
Dr. McCormack’s study is entitled
“A genome-wide meta-analysis of
aromatic anti-epileptic drug induced
maculopapular exanthema”
Calling all dog owners!
Neil Powell is a PhD student
in Queen’s University Belfast
who is researching the
reported ability of some
dogs to predict seizures
in their owners or a family
member. Neil is looking for
people who have frequent
seizures and who also own
a pet dog to take part in
the study. The dog must
be a pet dog not a trained
seizure-alert dog.
249 Crumlin Road,
Dublin 12. D12 RW92
Tel: 01 4557500
Fax: 01 4557013
Email: [email protected]
Web: www.epilepsy.ie
Registered Charity Number: 6170
Do you have frequent
seizures? Do you also own a
pet dog? Would you like to
Design and layout by
What Box? Creative.
Printed by Doggett Print & Design
2
If you would like to take
part you can contact Neil
directly at:
help with research into how
[email protected]
pet dogs respond to their
owner’s seizures?
News update
A 3D-printed epilepsy drug
and PPS number but will not contain
clinical information. Epilepsy patients on
the EPR will begin using the IHI later this
year.
http://goo.gl/eKIiH3
Can music help in epilepsy?
The FDA in the US has approved the first
ever 3D-printed drug and it’s for epilepsy!
Spritam, by Aprecia Pharmaceuticals is a
formulation of the common epilepsy drug
Levetiracetam. 3D printing is used to print
layers of the powdered drug, bind each
layer together, resulting in a porous
formulation that rapidly disintegrates with
a sip of liquid. The formulation, which will
be available in the US in 2016, may be of
particular benefit for patients who have
trouble swallowing pills, and for parents in
ensuring adherence in children. It is
already being discussed as a ‘game
changer’, paving the way for a new range
of personalised treatments that can be
‘printed’ at home.
http://goo.gl/obhtJU
Epilepsy EPR will trial new IHI
numbers
New American research has found that
the brains of people with epilepsy react
to music differently from the brains of
those who do not have epilepsy. Using
EEG, researchers at Ohio State University
recorded brainwave patterns while
participants listened to intermittent
periods of music and silence. While
significantly higher levels of brainwave
activity were recorded in all participants
while listening to music, the activity
in people with epilepsy tended to
synchronize more with the music,
especially in the temporal lobe where
music is processed and where approx.
80% of seizures originate. The authors told
the American Psychological Association
annual meeting that “music could
potentially be used as an intervention to
help people with epilepsy” in conjunction
with traditional treatment.
http://goo.gl/E9rhbL
EpSMon mobile app tracks
epilepsy risks
available on iPhone) at sudep.org/
epilepsy-self-monitor.
Positive effects of epilepsy selfmanagement programmes
A new study published in the journal
Epilepsia has found that epilepsy selfmanagement programmes can be “a
promising intervention from multiple
perspectives, particularly in relation
to disability management”. 83 chronic
epilepsy patients were recruited for the
study and assigned to either the PACES
self-management programme or to
‘treatment as normal’. PACES involved
an eight-week programme of group
meetings, co-led by a psychologist
and a trained peer with epilepsy, one
evening per week for 75 minutes.
Topics included medical, psychosocial,
cognitive and self-management aspects
of epilepsy and optimising epilepsyrelated communication. The study found
that participants who undertook PACES
improved relative to controls in terms of
their ability to self-manage, with these
positive effects continuing after six
months of follow-up. Why not check out
Epilepsy Ireland’s STEPS self-management
programme and find an upcoming course
near you?
http://goo.gl/RcY7YR
New drug trial for PCDH19
Epilepsy
HIQA has launched the new Individual
Health Identifier (IHI) system which will
see everyone in the country issued with a
unique, lifetime number to help with
tracking through health and social care
services. The Epilepsy Electronic Patient
Record (EPR, pictured) is one of three
existing databases that have been chosen
to trial the system before it is rolled out
extensively. The EPR is part of the National
Epilepsy Clinical Care Programme and
facilitates the sharing of clinical
information on over 5,000 people with
epilepsy. The new IHI aims to improve
patient safety and communications
between health professionals. It is
expected to contain the person’s name,
photo, signature, DOB, security questions
UK charity SUDEP Action has launched
a self-monitoring smartphone app that
brings life-saving knowledge straight to
your fingertips. The Epilepsy Self-Monitor
(EpSMon) app allows users to assess
their epilepsy and SUDEP risk every three
months and prompts them to see their
doctor if their risks increase. The app
also suggests simple ways people can
lower their risks if it is something they
can change. The app asks the user a
series of questions about their epilepsy,
their seizures and their well-being, then
analyses the answers to provide basic
advice. The analysis can then be further
discussed with the user’s healthcare team.
Check out this essential app (currently
PCDH19 Epilepsy is a condition of severe
seizures, autism, intellectual disability and
other symptoms which are all caused
by a mutation of the PCDH19 gene on
the x chromosome. Both boys and girls
can be born with this mutation but
only girls suffer from the symptoms of
the condition. Up to 10% of all girls that
begin having seizures before the age of
5 may have PCDH19 epilepsy. Now, an
international team, led by Prof. Jozef Gecz
from the University of Adelaide has made
a breakthrough discovery in treating the
disorder. The team report that children
with PCDH19 are deficient in a hormone
called allopregnanolone and trials have
already begun to test the effect of a
synthetic form of the hormone. It will be
the world’s first clinical trial to test the
therapy, which will aim to delay the onset
of seizures in order to reduce the effects
of associated autism and intellectual
disability.
http://goo.gl/y0iFMc
3
Yay or Nay – Can Teenagers Be Trusted to Take
Their Medication?
Negative feedback and raised eyebrows
from teenage friends can be very
persuasive.
If lacking in information, a teenager
might not understand how important
medication is. They may be in denial. After
having a few years without seizures they
might be tempted to secretly stop taking
an anti-epileptic drug, under the delusion
that it is no longer needed. Fear of sideeffects can also be a deterrent, with
hormonal mood swings being unfairly
attributed to the little tablets.
Some teenagers have a bad
reputation for trying illegal drugs.
But can they be relied on to take
the ones prescribed to them?
Epilepsy News columnist Maria
Carty-Mole debates both sides of
the argument.
That’s Mental
The teenage years are a tricky time in
physical, psychological and educational
development, when parents have to
start handing responsibilities over. No
adolescent appreciates Mam and Dad
dictating how they should dress or how
late they can stay up, and the same
applies to how they should take their
medication.
Having adults persistently reminding you
to do something can make you want to
do the exact opposite, and what a parent
calls ‘protecting’, a fed up offspring may
label as ‘pestering’ or ‘nagging’. This can
result in a refusal to take tablets – an act
of rebellion, resisting the orders that come
from authority figures, be they parents,
carers or doctors. It’s just an alternative
way of testing limits and gaining a sense
of self-control.
Another reason why a teen might not
be keen is the classic fear of being
stigmatised. “All teenagers just want to
be the same as their peers,” says Maria
Keegan, Children’s Neurology Clinical
Nurse Specialist. “This proves challenging
for the girls and boys with epilepsy who
may have to remain on anti-epileptic
medication for life. They can be bothered
that they have the condition, and would
often say to their parents or carers that
they just don’t want to be taking tablets.”
4
Most of all, when looking at this age
group we have to make sure not to
declare skipping medication as rebellion
or denial if it’s just pure, genuine
forgetfulness. A younger teenager’s
organisational skills might not be fully
developed yet, and a combination of
school, part-time jobs, socialising and
hobbies mean that teens live distracting
lifestyles.
As do most of us, in fact. Some people
can never be trusted with medication
administration, no matter how old
they are. “I’m 40 and I still find it hard to
Like, Totes
remember, even though I’ve been taking
But wait a second: isn’t this all just a tiny
medication for over 25 years!” says Lydia.
bit patronising? I remember being 14 and “I also forget if I’ve even taken them!” This
a man telling me that I was ‘surprisingly
common dilemma explains the popularity
mature’ for my age. I thanked him
of calendars on fridges, pill boxes on
graciously for his compliment, but secretly bedside tables, and reminder apps on
I was disgusted by his condescending
smartphones.
manner. There are many cringing
Now, if you’ll excuse me, it’s nearly 8
misconceptions about teenagers, and isn’t
o’clock…
the idea that they are unable to follow
treatment recommendations just another
ageist stereotype?
Sarah, 16, certainly thinks so. “I remember
to take my meds every day and night,”
she says indignantly. “It’s not fair to say
that ALL teenagers aren’t able to take
their medication – some are capable of
remembering.” She makes a good point.
Young people mature at various rates, and
to make a sweeping statement about all
teenagers at once rather than take it on a
case-by-case basis is surely inaccurate.
Maria Keegan agrees that every case
is different. “When parents should
start to hand over the responsibility
of remembering to take medication
depends on each child’s intellectual
ability, maturity, and their understanding
of their diagnosis.”
An understanding of the diagnosis is
significant. The main incentive for taking
medication is being very aware – and
scared – of what the consequences will
be if we don’t bother. Teenagers are
capable of recognising the importance of
AEDs, particularly if they have guidance
from a qualified adult who they trust and
who can answer questions and remove
confusion. Good family support is also a
bonus.
Yay or Nay…what do you say?
Yay:
“I have always remembered since I was
11. My thing was that if I didn’t take my
meds I would have a seizure and who
wants that? So I got into the habit real
fast.” – Alex
Nay
“As a teenager I missed a LOT of meds.
Oftentimes I would remember and just
be too lazy to walk to the next room to
get them.” – Sophie
“Nobody can be trusted to take meds,
no matter what age.” – Charlie
Names have been changed at participant’s request.
New Valproate patient educational materials
Following the European Medicines
Agency (EMA) decision in late 2014
relating to strengthening the warnings on
the use of valproate in women and girls,
Sanofi (the manufacturer of Epilim) have
distributed new educational materials
about the risks associated with the drug in
female children, women of childbearing
potential and pregnant women.
The materials have been approved by
the Health Products Regulatory Authority
(HPRA) and have been sent to health
professionals including neurologists,
psychologists, GPs, family planning
centres and others.
In addition to a guide for prescribers,
the materials also consist of a patient
information booklet (which the doctor
can give to the patient) as well as a
patient information form/ checklist
which can be used to guide discussions
between the doctor and patient and
which can be stored on the patient file.
Epilepsy Ireland welcomes this move,
which was mandated by the EMA in
November last. We hope that increased
dialogue and more informed decisions
can now be made around the risks
involved around valproate and pregnancy.
A recent online survey conducted
by Epilepsy Ireland of 131 women/
parents of girls taking Valproate found
that awareness of the issue was quite
poor and that discussions were not
yet commonplace between health
professionals and patients.
For example, of the 52 respondents who
had appointments with their medical
professional since the EMA ruling, only 8
said that the new restrictions had been
discussed. Only 3 of the 131 people
surveyed had been proactively contacted
by their medical team (phone call, letter
etc.) in the same period.
Epilepsy Ireland and the other members
of the Fetal Anti-Convulsant Syndrome
(FACS) Forum - Disability Federation
Ireland, Genetic and Rare Diseases
Organisation, Medical Research Charities
Group and the Organisation for AntiConvulsant Syndromes Ireland – will
continue to work to raise awareness of
the risks.
Be informed of the risks:
http://bit.ly/1e4u886
Download the new materials:
http://bit.ly/1HUpzFj
Update:
Following a recent meeting between the
FACS Forum and HPRA, Epilepsy Ireland
will repeat the Valproate survey later in
the year. This will help to identify if the
materials that have been distributed by
Sanofi are having the desired impact
on awareness and if they are leading to
improved doctor-patient communication
on the issue. Keep an eye on our
Facebook page and on epilepsy.ie.
Important Information for people with epilepsy
taking the drug Lyrica (Pregabalin)
The current packaging used for Lyrica 50/100/150mg. Please
continue to check that you receive the same packaging in the
pharmacy from month to month and query any changes.
The anti-epileptic drug (AED) Lyrica, whose generic name is
pregabalin has recently come off patent for use in epilepsy. This
means that generic versions of pregabalin can now be marketed
in Ireland and at least one generic version is currently available.
The medication is not classified as “interchangeable” by the
Health Products Regulatory Authority, which means that the
original branded version cannot be substituted with a generic
version. However, Epilepsy Ireland encourages everyone
currently taking Lyrica for their epilepsy to be vigilant in
ensuring that you continue to receive the same version as you
have previously.
Whether you are taking Lyrica or another AED, please follow our
three step guide to ensure that substitution does not occur:
1. Insist that your prescriber writes your AED prescription using
the regular brand name, not the generic name.
2. Insist that your prescriber hand-writes “do not substitute”
beside the name of each of your AEDs every time he/ she
writes your prescription
3. At your pharmacy, check your medications immediately
to ensure that they are exactly the same as the ones you
received last time. If they are not, insist that they are changed
back.
Unlike in most other treatment areas, there are serious evidencebased concerns regarding the safety of substituting a branded
AED with a generic version of that drug and even greater
concerns around switching from one generic AED to another
from time to time. Epilepsy Ireland maintains our long-standing
position that epilepsy drugs should not be substituted under
any circumstances.
Please note that our advice applies to people who are taking
Lyrica for the treatment of epilepsy. Lyrica also has a number of
other indications outside of epilepsy.
As always, the concern with substitution of AEDs is regarding
the switching from one version to another, rather than any
concern over the generic drug itself. If you have only recently
been prescribed pregabalin and have only ever received a
generic version of it, then you should continue to take only that
specific version in future and ensure that you are not switched
to another generic version or to the branded version.
Please contact your local Epilepsy Ireland office or your medical
team if you have any concerns.
Generic Substitution: http://bit.ly/1RDg485
5
Epilepsy Surgery and me
by Aileen Gardiner
When I got older and started to go clubbing it was hard to meet
someone and tell them I had epilepsy without them doing a
runner on me. So I stopped telling people. One night I was out
with my friend Chris, we were about to go for chips when I had
a seizure. Some of the customers, girls about 18 or 19 started
to laugh. My friend told them I was having a seizure and they
started to apologise for laughing at me as they had thought I was
drunk. Chris told them they won’t be laughing next time they see
someone having a seizure. They had no answer to that.
When I was 24 I went to Beaumont Hospital for a Wada Test (see
page 7) to see if I was suitable for surgery. Part of test meant they
put half of my brain to sleep and a psychologist asked me a lot of
questions; to count up to ten and checked out my memory.
The test involved putting a tube into my leg through which they
put medication which travels to the brain to “put half of it asleep
and leave half of it awake”, the psychologist then asked me some
questions also to count to ten to test my memory. After this test,
they stitched my leg up and asked me the same questions.
I then had to wait for the decision as to whether I was suitable
for surgery. My leg was sore for about a week after the test and
I had to use a stick when walking. I got a week off work. I was
then asked to meet the doctors in Dublin who said I was suitable
Hi there, my name is Aileen Gardiner.
for surgery and that the operation, if successful, would stop me
I was first diagnosed with epilepsy at the age of two. I can’t
having the big seizures. There was a chance I might continue to
remember what my first seizure was like because I was still just a have smaller seizures but also there was a good chance that I
little baby when I got my first one. I have had to live with epilepsy wouldn’t have any more seizures.
my whole life from such a young age. One day I asked my mum
what age was I when I got my first seizure and what was I doing. In 2009 I went into Beaumont for the operation. When the big
day came I had to fast from midnight. I was taken down to the
She told me that I was outside playing in the back-yard and I
theatre early next morning. I was in theatre from 8.00am until
came running to her and said “mam I feel funny”. “What do you
5.00pm. When I woke up I was in some pain but after a spell in
mean?”, she replied, I did not answer as I just fell down. Luckily
the recovery room I came back to myself and was returned to
she caught me just before I hit the floor. I had blanked out and
my room. The doctors seemed happy with my results and hoped
when I came to I just went to sleep because I was so tired.
that I would be seizure free after the operation.
I didn’t like having epilepsy as a kid because every time I had
However shortly after returning home I had a big seizure
a seizure in school, at my lunch break, I was brought inside to
and then frequency increased. So the first operation was not
sit down, and I couldn’t talk to my friends. I would also end up
with cuts and bruises after my seizures. I didn’t like this as people a success. I went back into Beaumont Hospital for a second
operation. Following this I did feel quite sick as a result of the
would always ask how did you get that scar or how did you get
anaesthetic. But after a short while I began to feel alright. I was
that big blue bruise on around your eye. Half of the time I didn’t
in hospital for a number of days. The doctors were again very
want to tell them as it was embarrassing and I didn’t want them
pleased with the results of the operation and told me I could go
to laugh at me.
home. I was already packed and ready to leave when my mam
In fact, I hated having epilepsy as a kid. I couldn’t go horse riding and dad collected me.
and once when swimming in a pool I had a seizure and nearly
Since that day I have been seizure free (3 years now). I still see
went under. Thankfully the life-guard saved me. As a teenager,
my doctor every year for check-ups and my medication has
if ever I went on a sleep over I wasn’t allowed sleep on the top
been reduced. I notice that there are changes in my moods and
bunk in case I had a seizure and fell. I was never able to babysit
behaviour and I am not as cross or angry as I used to be.
anyone else’s child in case I had a seizure and frightened them.
Having epilepsy made life difficult for my family too. My dad
always had to drive me to Crumlin Hospital for my appointments.
My mother had to sort my medication and when I had to go into
hospital for the EEG test she had to sleep on the hospital floor.
6
I am now going out with my friend Frazer for 2 years and he
makes me feel very happy. My life feels complete. I would like to
say a big thank you to all the doctors for all their hard work, and
an even bigger thank you to my family for looking after all their
care, and especially for all the driving between Borris-in Ossory
and Dublin.
The Wada Test
Contact Corner
This test is used to establish cerebral language and memory
representation of each hemisphere.
ROOMMATE WANTED: Hello! I’m a young woman
working in Dublin is looking for someone to share a
room with, preferably female. I have epilepsy and if you
do too we can help each other! Would also mean lower
cost on rent. I’m tidy and clean. If interested, please
contact [email protected] and we will forward your
details.
It helps to determine if a person with epilepsy can function
when the piece of brain is removed in surgery i.e. where it is
suspected the seizures are starting from.
The test is conducted with the patient awake. Essentially,
a barbiturate (which is usually sodium amobarbital) is
introduced into one of the interna carotid arteries via a
cannula or intra-arterial catheter from the femoral artery.
The drug is injected into one hemisphere at a time. The
effect is to shut down any language and/or memory
function in that hemisphere in order to evaluate the
other hemisphere. Then the patient is engaged in a series
of language and memory related tests. The memory is
evaluated by showing a series of items or pictures to the
patient so that within a few minutes as soon as the effect
of the medication is dissipated, the ability to recall can be
tested.
If the person passes the test then they are put forward for
surgery and if not then surgery is not an option.
Epilepsy Ireland needs you!
Would you like to share your epilepsy story? Personal
stories like Aileen’s are very popular amongst readers of
Epilepsy News. These stories can provide inspiration and
hope for others learning to cope with their condition.
So if you have a story, take the first step and contact
[email protected]
Information Morning, Imperial Hotel, Cork
Epilepsy Ireland hosted an Information morning in the
Imperial Hotel, Cork on Wednesday, 15th July.
We were delighted to have guest speakers (pictured left)
Noreen Teahan, cANP Paediatric Services CUH and Sandra
Moloney, cANP Adult Services CUH.
Noreen spoke about epilepsy specifically related to children,
including triggers and treatment including VNS and ketogenic
diet. She also emphasised the importance of seizure recording
and outlined details which would be necessary for a Paediatric
Neurologist appointment.
Sandra gave an update of the Epilepsy Care Programme, the
role of the cANP, Neurology services in the CUH, including the
Epilepsy Monitoring Unit. She also spoke about the diagnosis
of epilepsy, medication and treatment including assessment
and suitability for insertion of a VNS.
The feedback from the morning was extremely positive with
many mentioning that they were delighted to have an up
to date knowledge of the variety of services and treatment
which are now available.
Many thanks to Sandra and Noreen, and to Cyberonics for
supporting the event
7
New Publications
Epilepsy Ireland is delighted to announce three new
publications designed to help people understand epilepsy
better. These publications are free of charge and are available
from all regional offices and for download on
www.epilepsy.ie.
4. Explaining a parent’s or sibling’s epilepsy to children
Talking About Epilepsy
5. Explaining to others about epilepsy
Explaining a parent’s or sibling’s epilepsy to a young child can
be difficult at first. It’s important to use language at a level the
child can understand. The description needs to be clear but not
frightening. Consideration is given in this section to addressing
the issue for very young and older children.
It is also important to consider who else outside the family circle
needs to know about your child’s or your own epilepsy. People
often do not understand epilepsy, nor will not know how it
affects a person. While they may wish to help they may not fully
understand how to deal with a seizure to ensure the person’s
safety.
This section addresses the very important issue of deciding who
to tell – a simple set of questions will help guide you in choosing
who you should tell
6. Epilepsy Ireland resources
This booklet is divided into six sections:
1. Explaining epilepsy to a child
It is recommended that adults talk to children about epilepsy,
whether the epilepsy is the child’s or the adult’s. Talking to
children about epilepsy helps them to be involved and can
make things easier. This is best done in a calm, relaxed manner,
but how does one go about explaining epilepsy? This first
section provides a clear guideline as to how best approach
explaining epilepsy in a clear and concise manner.
The final section outlines other Epilepsy Ireland resources which
can help explain and talk about epilepsy.
A review of these resources is on page opposite.
Download: http://goo.gl/RDNxgf
Epilepsy and School: Frequently asked questions
2. Talking to children about their own epilepsy
This section addresses three important questions that any
parent might ask:
• Why tell your child about their epilepsy?
• When is the best time to tell your child?
• How should you tell your child?
Following this brief introduction advice is given to help parents
explain epilepsy to younger children aged 3 to 7 and a separate
piece on telling older children, aged 8 to 12. Advice is given on
how to cover such topics as – Talking about seizures; Talking
about tests and Talking about medication. The section also
includes a handy Key Points summary.
3. Talking to a teenager about their epilepsy
The main emphasis here is to encourage teenagers to gradually
take an active role in managing their epilepsy. Parents need
to be aware of any potential implications of their teenager’s
lifestyle, education and career choices, particularly as the
teenage years are times when a young person is striving for
increased independence. Key issues include:
• Lifestyle choices
• Getting the balance right between having fun and staying
safe
• The importance of keeping a seizure diary
Whether your child is starting school for the first time, or
returning to school, as a parent you will need to consider what
the school should know about their epilepsy. Most children with
epilepsy will have positive experiences of school but problems
can arise so it’s good to have thought about how to deal with
them. Parents often have concerns about what to tell the school
and when. A big worry can be how the school will handle
seizures. This is an understandable worry. This new booklet deals
with common concerns parents raise and gives suggestions for
dealing with the school.
As well as addressing the most frequently asked questions,
seizure management procedures are given for tonic clonic as
well as non-convulsive seizures and also advice for managing
seizures on the school bus and for people in wheelchairs.
Download: http://goo.gl/rh1wnA
8
School Support:
Epilepsy Ireland’s “Epilepsy Awareness Presentation” is designed
to help staff understand epilepsy and the proper management
of seizures should a child/ student have a seizure while in school.
All our service staff can provide a presentation on request. In
2014 EI staff delivered epilepsy awareness presentations to 1,866
teachers and students as part of our Education Programme.
Epilepsy Ireland Resources
When Mummy Gets Dizzy and Daddy Falls Down
Younger Children (aged 3 to 7)
Check the online store at epilepsy.ie
• “My Parent has Epilepsy” ID card: This card can be
carried by the child and contains contact details, next
of kin details, medication list, GP name, signs of seizures
and first aid guidelines. • My Lights Go Out: a story book for young children
with epilepsy or for young children whose siblings have
epilepsy - available for purchase online €8.95
• When Mummy Gets Dizzy and When Daddy Falls
Down: a poetry and colouring book for children who
have a parent with epilepsy – available free (for parents
who have epilepsy)
Older Children (aged 8 to 12)
• The Interactive Illustrated Junior Encyclopaedia of
Epilepsy: Windows version CD-ROM, edited by Richard
Appleton – available for purchase online €16.65 –
Epilepsy Ireland members €11.65 (limited stock)
• Everything a Child Need to Know About Epilepsy:
a book by Dr C Yemula and Dr F Besag available for
purchase online €9.65
For all the Family
Epilepsy Ireland member Orla Ellison with her daughter Lacey (left)
and friend Brooke trying out the new colouring book
This poetry and colouring book is written to support parents
with epilepsy when explaining their epilepsy to young children.
The poems have been written based on simple common
features of both complex partial and tonic clonic seizures. The
pictures can be coloured by the child, which will help reinforce
their learning.
Thank you to Geraldine Dunne, EI’s National Information Officer
for writing the poems and to Philip Elliott for the wonderful
illustrations.
Download: http://goo.gl/rh1wnA
• Action Zone Game: a family board game to learn
about epilepsy for 2 or more players aged 5+. Available
from EI Head Office, post & packaging €5.00
• Epilepsy Ireland Smartphone App: The Android app
is always to hand to record your child’s seizures and to
help in encouraging teens to take an active role in their
epilepsy. Free of charge from the Playstore and coming
soon for iPhone.
For Schools
• Managing Chronic Health Conditions at School:
This is a very useful resource, which was developed
in conjunction with the Department of Education.
Epilepsy Ireland, the Diabetes Federation of Ireland,
the Asthma Society of Ireland and Anaphylaxis Ireland
contributed to the publication. Information about
epilepsy, seizure management guidelines and templates
for care plans are all included. A hard copy was
distributed to all primary schools copies are now only
available as a PDF download from www.epilepsy.ie a 9
minute video clip explaining epilepsy is also available
for viewing on the epilepsy website and on our Youtube
channel, BrainwaveEpilepsy.
9
How horses helped my epilepsy
be forever grateful. His name was Billy,
and he was the cheekiest little pony I
had ever seen! I was a 12 year old who
had epilepsy, with no confidence and
not the best horse rider. Little did I know
that within two years I would be almost
seizure-free.
My name is Laura Hall. I am 18 years old
and I have epilepsy. I was diagnosed
when I was 7, I only ever had a few tonicclonic seizures but I had countless partial
seizures. It really affected my confidence,
I was nervous of doing anything in case
I had a seizure. The one place where I
felt completely at ease was around the
stables. I know it might sound crazy
but I truly believe that horses cured my
epilepsy.
I was told that I couldn’t horse ride until I
was a year seizure free and when I did it
would have to be supervised. However,
I was a determined 8 year old girl who
loved horses. For some reason I never
had a seizure on a horse, or around
horses. Hippotherapy and therapeutic
horseback riding is a new state of the art
therapeutic approach to treat some of
the most ailing neurological conditions
such as autism, multiple sclerosis, cerebral
palsy, Parkinson’s disease, behavioural
problems, learning disabilities, emotional
problems and many others, each showing
incredibly positive results. Horses have
been utilized as a therapeutic aid since
the ancient Greeks used them for those
people who had incurable illnesses. It is
very hard to explain the “magical” power
that horses have, but I think that horses
have extraordinary healing powers.
I was lucky enough to live in a rural
area with lots of horses around. We
owned competition horses but we also
had some rescued horses that needed
healing too. Horses change the way you
think about yourself. Through this silent
communication I was able to build up my
self-esteem and confidence. A few years
later I was given a loan of a little rescue
pony from a family friend, to whom I will
10
Billy and I had a fantastic connection,
when we were together he was an
absolute saint. However, being a typical
cheeky 13.2hh pony when I wasn’t
around, he usually acted the maggot.
Throughout the week, he would usually
jump out of his field, or open his stable
door and head straight for the feed room,
he would chase horses that were twice
his size and I cannot forget the day my
mother went grass-skating (similar to
ice-skating) as he dragged her through
two fields while she attempted to bring
him in to the stables. But you had to love
him! We had an indescribable bond that
I could never explain; he would follow
me around the fields and would never
shy away from anything that most horses
would. Over the years that I had him, we
competed at RDS Dublin Horse show, the
IPS Championships in Cavan and many
others.
The fact is, riding has also enhanced my
emotional growth well beyond my years,
and it has affected my social life as well. I
used to have a great deal of anger which
was a side effect of the medications I
was on. I frequently lashed out at others
who did not deserve it. Through my
riding, I developed emotional self-control.
Horses are highly intelligent and sensitive
creatures, and can always detect the
feelings of riders. So, I decided to run a
horse-show fundraiser for Epilepsy Ireland
because I wanted to give something back
and because I wanted to raise awareness
among the people I’ve been competing
with for years. We managed to raise over
2,000 euro in just one day!
Of course, without the help of Epilepsy
Ireland and the support of my family and
friends I wouldn’t be who I am today. I
wouldn’t be the person I am now if I had
never developed epilepsy. I may never
have pushed myself to prove anything,
may never have achieved the things I
have so far. I strongly believe, as do many
others who specialise in epilepsy, that
stress is a major contributory factor to
seizures. Being able to relax and stay stress
free is thus very helpful and for me it was
in the saddle.
By Laura Hall
Hippotherapy is a form of
physical, occupational and speech
therapy in which a therapist uses the
characteristic movements of a horse
to provide carefully graded motor
and sensory input. A foundation is
established to improve neurological
function and sensory processing,
which can be generalized to a wide
range of daily activities. Unlike
therapeutic horseback riding (where
specific riding skills are taught), the
movement of the horse is a means
to a treatment goal when utilizing
hippotherapy as a treatment strategy.
Derived from the Greek hippos
(horse), “hippotherapy” literally refers
to treatment or therapy aided by a
horse. The concept of hippotherapy
finds its earliest recorded mention
in the ancient Greek writings of
Hippocrates. However, hippotherapy
as a formalized discipline was not
developed until the 1960s, when
it began to be used in Germany,
Austria, and Switzerland as an
adjunct to traditional physical
therapy. In Germany hippotherapy
was treatment by a physiotherapist,
a specially trained horse, and a
horse handler. The theories of
physiotherapy practice were applied;
the physiotherapist gave directives
to the horse handler as to the gait,
tempo, cadence, and direction for
the horse to perform. The movement
of the horse was carefully modulated
to influence neuromuscular changes
in the patient. The first standardized
hippotherapy curriculum would be
formulated in the late 1980s by a
group of Canadian and American
therapists who traveled to Germany
to learn about hippotherapy and
would bring the new discipline
back to North America upon their
return. The discipline was formalized
in the United States in 1992 with
the formation of the American
Hippotherapy Association (AHA).
Since its inception, the AHA has
established official standards of
practice and formalized therapist
educational curriculum processes for
occupational, physical and speech
therapists in the United States.
http://www.americanhippotherapy
association.org/
Family Fun Day - Dublin Zoo - July 11th
The Family Fun Day to Dublin Zoo was a great success with a
record turnout of 135 people attending.
Funding for the event was made possible by the generous
donation of the late Caroline Dollard, who had epilepsy herself,
and her husband Adrian Dunne who raised funds for Epilepsy
The zoo volunteers helped with maps, information and guided
Ireland after her passing. Caroline, who loved life, wanted
tours for our group. They brought so much to the enjoyment of
the day and a big thank you to the entire education department the money she raised to be used to provide an opportunity
at Dublin Zoo for arranging this for our members. A lovely lunch for families to come together in a fun environment. Adrian
attended on the day with his niece and nephew and said he was
was enjoyed by all in the Meercat Restaurant.
delighted to see Caroline’s dream come true and see families
We mustn’t forget the birthday celebration for Lorcan Walsh who enjoying their day, it meant a lot to him, hopefully we can
very kindly shared his yummy cake.
continue to make this happen in the future.
Left: Adrian Dunne, centre, who raised
funds for the event
Right: Epilepsy Ireland volunteers gave
their time to come and help out on the
day. A big thank you to Tammy Long and
David O’ Hara, they did a great job on the
day. We hope to see you both again at
events in the future.
11
Fundraising
Upcoming
Cork Gala Ball for Epilepsy
Ireland
Saturday, November 28th, 7pm
Montenotte Hotel
Tickets €30
Please support the Gala Dinner Dance
in aid of Epilepsy Ireland in Cork,
organised by EI members the Murphy
family. Tickets are just €30 and a great
night of music, craic and and spot
prizes is in store. Call Stephanie on
083-1873079 for more information
and tickets.
Brainteaser Quiz Night
The ever popular Brainteaser Quiz Night
with Rick O’Shea returns in November.
Hope to see you on Thursday November
19th at DTwo, Harcourt St. Contact Ashley
at 01 4557500 to reserve your table. €40
per team.
All Cash Mega Raffle
EI members and supporters have raised
over €90,000 in crucial funds for Epilepsy
Ireland in the past four years through the
annual raffle. Tickets for the 2015 raffle are
enclosed with this issue and are just
€3 per each, with almost €3,000 in prizes
to be won. Thank you for your support!
Christmas is coming!
Keep an eye on epilepsy.ie and our social
media pages for details of the 2016
Epilepsy Ireland calendar and our new
range of Christmas cards, available from
October.
Call for Volunteers
Can you help Epilepsy Ireland just a few
hours a year by volunteering for our
annual churchgate collections in your
area? Volunteers are needed countrywide
– please contact Barbara at 01 4557500 to
find out more.
thank you
Saddle Up cycle raises €15,000
for Epilepsy Ireland
Brenda & Brendan, and to all the
organisers, volunteers and sponsors who
supported the cycle. Plans are already
underway to organise an even bigger
Saddle Up for Epilepsy in 2016 so stay
tuned for news on epilepsy.ie and our
Facebook page.
Pint of Science festival supports
Epilepsy Ireland
The first ever Saddle Up for Epilepsy cycle,
which took place on St. Valentine’s Day in
Co Mayo has raised €15,266 for Epilepsy
Ireland. The brainchild of Mayo-woman
Brenda Quigg to mark International
Epilepsy Day, the inaugural cycle attracted
over 250 leisure cyclists who cycled over
three different routes in Co Mayo to raise
awareness of epilepsy and funds for
Epilepsy Ireland. In June, event organisers
Brenda Quigg and Brendan Quigley
presented Epilepsy Ireland’s Peter Murphy
with the proceeds. A huge thank you to
12
A big thank you to Dr Niamh O’Sullivan
and the organisers of the brilliant Pint of
Science Festival who selected Epilepsy
Ireland as their beneficiary charity for this
year’s series of events. The festival aims
to bring science and research into social
settings where the public can engage
openly and informally with researchers.
Over 80 Irish researchers took part over 3
nights and monies raised from collections
at the venues will be used to support
Epilepsy Ireland’s research activities.
Trip to Tipp cycle
Thank you to Dion McKeown and all the
cyclists who took part in the recent Trip to
Tipp 250km cycle marking the 125th
anniversary of the Cobh Pirates Rugby
Club. The cycle raised a brilliant €3,100 for
our work. Well done guys, we really
appreciate your fantastic efforts!
Tour de Gaggs 2015
Cork Marathon
The sixth annual Tour De Gaggs cycle
from Cork to Roscommon took place
in June in memory of Alan Gallagher.
Over 40 people took part again this year
either by cycling the 300km route or
by providing one of the many supports
needed for the cyclists. A huge thank you
to the Gallagher family and all involved
for their fantastic ongoing support of
Epilepsy Ireland.
Sincere thanks to Ann Joyce, Headford,
Co. Galway who recently made a
generous donation to Epilepsy Ireland on
behalf of her parents Tom & the late
Kathleen Walsh from Dunmore, Co.
Galway. Many thanks to everyone who
contributed to the fundraiser. The
donation will be used to enhance
community activities in the region.
To Hell and Back
Dublin Women’s Mini Marathon
Margaret, Michelle, Margaret & Caroline
at House after the mini marathon.
Thank You Ann
Thank you to our supporters to who
braved the rain soaked Cork streets in
June for the Cork City Marathon. Pictured
are Jennifer Callinan, Susan Cullen & Harry
Walsh from McCutcheon Halley Walsh
Planning Consultants who raised over
€1,400 for our work. Thanks guys for your
amazing support and to everyone who
made a donation.
Emma’s charitable haircut
Well done Richard Murphy, Dylan Doran,
Stephen Wildes, Shane Nolan & Joseph
Long who undertook the Hell & Back
Challenge in June. Richard and co raised a
hell of a lot of money too - €1,030. They
call it Ireland’s toughest 10k and judging
by the pic, we’d say that’s accurate!
Conquering Croghan Hill
Thank you Esme, Emilie and Kerrie
A massive thank you to all our runners
and walkers who took part in the
Women’s Mini Marathon in June. We
hugely appreciate all the support
(especially given the horrendous weather
on the day!) and we were delighted
to welcome our ladies at our postevent reception in House on Leeson St.
Congratulations to everyone!
A special thank you to young Emma
Rochford who got her lovely long hair cut
to raise funds for Epilepsy Ireland.
Inspirational Emma raised a fantastic €474
for Epilepsy Ireland and also donated her
cut hair to the Rapunzel Foundation.
A big thanks to Frank Kenny, Darren Cahill,
John McNamara & Davy Conroy who took
part in the punishing Croghan Hill
Challenge this summer in Offaly. They
raised a fantastic €1,000 for our charity.
13
News & Events
East region
(Co’s Dublin, Kildare, Wicklow)
Contact: Ina Murphy, Community
Resource Officer, Epilepsy Ireland,
249 Crumlin Road, Dublin 12. Tel:
01 4557500. Email: imurphy@
epilepsy.ie. Office Hours:
Mon, Tue & Wed, 10am - 6pm;
Thur 1.30pm - 6pm
Upcoming Events
Dublin: STEPS Epilepsy SelfManagement for People with
Epilepsy
Carmelite Community Centre, 56
Aungier Street, Dublin 2.
Tuesday September 29th October,
6th, 13th, 20th, 27th & November
3rd. 10.00am – 1.00pm
Dublin: STEPS Managing Your
Child’s Epilepsy – Parents
Programme
Carmelite Community Centre, 56
Aungier Street, Dublin 2.
Thursday October 1st, 8th, 15th &
22nd , 10am – 1pm
Dublin: STEPS Epilepsy SelfManagement for People with
Epilepsy
Carmelite Community Centre, 56
Aungier Street, Dublin 2.
Monday November 9th, 16th, 23rd,
30th, December 7th & 14th.
6.30pm – 9.30pm
There is no fee for these courses, but
it is important that you are free to
complete all sessions. Contact Ina or
Carina for bookings.
Wicklow: Family Fun Event for
members in the Wicklow Region
Wicklow Bowl & Kidzone Wicklow
Town - www.wicklowbowl.ie
Saturday October 17th
4.30pm to 7.00pm
Light refreshments will be provided.
The event is suitable for all ages, to
book a place please contact Ina or
Carina.
south east
(Co’s Kilkenny, Carlow,
Waterford, Wexford and South
Tipperary)
Contact: Joan Ryan,
Community Resource Officer,
Epilepsy Ireland, c/o HSE,
St. Joseph’s, Waterford Rd,
Kilkenny. Tel: 0567789904.
Email: [email protected]. Office
Hours: Mon, Tue, Wed 10am 5.30pm; Thur 10am - 2pm
Upcoming Events
Cashel: Epilepsy Information
Evening for Teachers/SNAs
14
Halla na Feile, Canopy St., Cashel
Tuesday 29th September
7.00pm
No charge. Places limited so
booking essential.
Cashel: Outreach Service
Cashel, Co Tipperary (venue to be
confirmed)
Tuesday 29th September
Time: 2.00 – 5.30pm
Outreach is by appointment
only, please contact Joan to book
appointment.
Clonmel: Epilepsy Information
Evening for Teachers/SNAs
Clonmel Park Hotel
Tuesday 7th October
7.00pm
No charge. Places limited so
booking essential.
Clonmel: Outreach Service
Community Resource Centre,
Kickham Street, Clonmel
Wednesday 7th October
Time: 2.00 – 5.30pm
Outreach is by appointment
only, please contact Joan to book
appointment.
Waterford: Support Group
(Provisional)
Venue: To be confirmed
Wednesday 23rd September
7.30pm
Kilkenny: Support Group
Epilepsy Ireland Office, Kilkenny
Tuesday 20th October
7.30pm
Cork
Address: Epilepsy Ireland, 35
Washington Street, Cork. Tel: 021
4274774
South Lee & West Cork: Niamh
Jones, Community Resource Officer.
Email: [email protected]. Office
Hours: Mon & Tue 8am- 4.30pm;
Wed & Thur 8am – 1pm
North Lee & North Cork: Mary
Lawlor, Community Resource
Officer. Email: [email protected].
Office Hours: Tue, Wed, Fri 9.30am
-5.30pm; Thur 1.30pm - 5.30pm.
Upcoming Events
Cork: Support Group for Parents
of Children with Epilepsy Bishopstown GAA Club
Wednesday 16th September, 21st
October and 2nd December 2015
7.30pm
Cork: Evening Echo Ladies Mini
Marathon
Centre Park Road, Cork
Sunday 27th September 2015
1.00pm
You can now register either by
completing the application form in
the Evening Echo or you can enter
online at www.eveningecho.ie/
minimarathon/.
Sponsorship cards and t-shirts can
be collected from the Cork office.
Cork: STEPS Programme for
Adults with Epilepsy Imperial Hotel, Cork
Mondays September 7th, 14th, 21st
and 28th and October 5th and 12th
7.00pm - 10.00pm Cork: Family Fun Day Bishopstown GAA Club
Sunday 15th November
1.00pm – 4.00pm
Mallow: Parents Support
Group Venue: Ross House, Mallow
Date: September 15th
Time: 10.30am
Loretta Kennedy, CRO Epilepsy
Ireland and Ber Ryan, CNS Early
Intervention Team.
Charleville: Outreach Clinic St Joseph’s Foundation, Charleville
September 15th 2015
3.00pm
Toolkits and one to one
appointments may be booked in
advance.
mid-west region
(Co’s Limerick, Clare & North
Tipperary)
Contact: Anna Kelly, Community
Resource Officer, Epilepsy Ireland,
Social Service Centre. Henry St.
Limerick. Tel: 061 – 313773.
Email: [email protected].
Office Hours: Mon 9.30am - 5pm;
Wed 9.30am - 5.30pm; Thur
12.30pm - 5pm; Fri 11.30am - 4pm.
Upcoming Events
Limerick: Group Toolkit morning
Monday 14th September
10.00am - 12.30pm
Contact the Limerick office for
further details.
Limerick: Parents STEPS
Programme
Limerick Education Centre
Wednesday September 2nd; 9th;
16th; & 23rd
Prior booking essential with the
Limerick Office
Limerick: Information evening for
Teachers and SNA’s
Kilmurray Lodge Hotel
Wednesday, 21st October
7.15pm. No charge, but please
contact Anna to book.
Kerry
Contact: Kathryn Foley, Community
Resource Officer, Epilepsy Ireland,
Glenwood, Park Road, Killarney,
Co. Kerry. Tel: 064 6630301. Email:
[email protected] . Office Hours:
Mon- Fri 9am - 2.30pm.
Upcoming Events
Kerry: Self-Management
Programme for people with
epilepsy
Wednesday 4th November for 6
consecutive Wednesday mornings
10am-12.30pm.
Killarney: Support Group Meeting
for people with Epilepsy
Wednesday 26th August; 23rd
September; 21st October; 24th
November
10.30am-12.30pm
Kerry: Support Group Meeting for
parents of children with Epilepsy
Wednesday 16th September;
Tuesday 20th October; Tuesday 1st
December;
10.30am -12pm.
Kerry: General Hospital Outreach
Kathryn is available to meet with
you prior to or after your hospital
appointment on Monday morning.
Tralee: Outreach Service Monday afternoons- Please contact
Kathryn if you would like to meet in
the Tralee area.
Midlands
(Co’s Offaly, Laois, Westmeath &
Longford)
Contact: Margaret Bassett,
Community Resource Officer,
Epilepsy Ireland, c/o Carers
Association, Market Square,
Tullamore, Co. Offaly. Tel: 057
9346790. Email: mbassett@epilepsy.
ie. Office Hours: Mon, Tue, Wed & Fri
10am - 2.30pm; Thur 9am - 5pm.
Upcoming Events
Tullamore: STEPS programme
Commences 16th September - One
evening per week for 6 weeks, now
enrolling
7.00pm
Tullamore: Teachers/SNAs
Information Evening
OCIL Clonminch Rd, Tullamore
Wednesday 17th November
7.00pm sharp
No cover charge but early booking
essential.
north west
(Co’s Donegal, Sligo & Leitrim)
Contact: Agnes Mooney,
Community Resource Officer,
Epilepsy Ireland, Grand Central
Complex, Floor 2B, Canal Road,
Letterkenny, Co Donegal. Tel: 074
9168725. Sligo Office: Epilepsy
Ireland, 2C Castle House, Castle
Street, Sligo. Tel: 071 9141858. Email:
[email protected]. Office Hours:
Mon, Tue, Wed 9am - 5pm; Thur
9am - 1pm.
Upcoming Events
Sligo: STEPS programme for
parents of children with epilepsy.
St Michaels Family Life Centre,
Church Hill, Sligo
Monday 7th 14th, 21st & 28th
September
6.00pm to 9.00pm
Places are limited so please contact
Agnes to book a place.
Sligo: Outreach Service
Sligo Office, Castle House, Castle
Street, Sligo
Monday 7th September, 11am to
1pm
Monday 28th September 2pm to
3.30pm
Outreach is by appointment only,
please call Agnes to make an
appointment.
Letterkenny: STEPS Programme
for parents of children with
epilepsy
Station House Hotel
Monday 9th, 16th, 23rd, & 30th
November
6.00pm to 9.00pm.
Places are limited so please contact
Agnes to book a place.
Letterkenny: Epilepsy Awareness
and information for Teachers and
Special Needs Assistants
Station House Hotel, Letterkenny,
Co. Donegal.
December 2nd
7.00pm - 8.30pm
Places are limited, so please book a
place by calling Agnes
Wednesday June 10th - 11.00am 12.30pm
Outreach is by appointment only
please contact Agnes to book your
appointment.
western region
(Co’s Galway, Mayo, Roscommon)
Contact: Edel Killarney, Epilepsy
Ireland, Westside Resource Centre,
Seamus Quirke Rd, Westside,
Galway,
Tel: 091-587640. Email: ekillarney@
epilepsy.ie.
Office Hours: Mon-Wed 8.30am 4.00 pm; Friday 9.00am - 1.00pm
Upcoming Events
Galway: Parents STEPS
Programme
Westside Resource Centre, Galway
Tuesday September 29th – Tuesday
October 20th
11.00am – 1.30pm
Mayo: Teachers Epilepsy
Awareness Evening
Mayo Education Centre, Castlebar,
Co. Mayo
Tuesday October 6th
7.00pm
Galway: Teachers Epilepsy
Awareness Evening
Galway Education Centre, Cluain
Mhuire, Wellpark, Galway
Tuesday October 13th
6.30pm
Galway: Women & Epilepsy Event
Menlo Park Hotel Galway
Wednesday, 21st of October 2015
10.00am – 3.00pm
north east region
Online Support Groups
September
1st Sept, 7.00pm, Parents Support
Group
8th Sept, 7.00pm, General Support
Group
16th Sept, 11.00am, General
Support Group
22nd Sept, 7.00pm, General
Support Group
29th Sept, 7.00pm, Parents
Support Group
October
6th October, 7.00pm, General
Support Group
14th October, 11.00am, Parents
Support Group.
(Co’s Louth, Meath, Cavan,
Monaghan)
Contact: Noreen O’Donnell,
Community Resource Officer,
Epilepsy Ireland, Unit 1a Partnership
Court, Park Street, Dundalk, Co
Louth. Tel: 042 – 9337585 Email:
[email protected]. Office Hours:
Mon, Tue & Wed 9am - 6pm.
STEPS - Learning to live well with epilepsy
For some people with epilepsy, it can be
a challenge to learn to manage epilepsy
and create fulfilling positive lives with the
condition. There is so much information,
but what is relevant? How do I make my
way through the healthcare services? Are
there others with epilepsy that I can talk
to? It takes time to understand epilepsy,
emotionally adjust, and make changes in
life to manage the condition.
With this in mind, Epilepsy Ireland
developed the STEPS (Support & Training
in EPilepsy Self-Management) Programme
to help to support people with epilepsy
to manage their condition and also
to gain skills to improve their overall
‘wellness’ and quality of life. The course
is being run in a number of locations
across Ireland, bringing people with
epilepsy together in a structured group
environment over a number of sessions.
The groups are facilitated by epilepsy
Ireland Community Resource Officers,
who have many years of experience
supporting and providing information for
people with epilepsy and their families.
In small groups, people will learn about
their own condition and its management,
as well as learning about the healthcare
system for people with epilepsy,
preparing for their neurologist visit, first
aid for seizures, understanding triggers
and symptoms and broader lifestyle and
safety issues. As well as this, we take a
broader approach to self-management,
looking at managing moods and
thoughts, managing diet, sleep and
exercise, understanding and managing
stress, and planning for the future.
If you are interested, check dates for
STEPS in your area in the listings above.
STEPS offers a great opportunity to:
• Meet others who have epilepsy and
learn from each other.
• Find out more about how to manage
one’s own epilepsy
• Learn about each aspect of epilepsy
management
• Understand actions which improve selfmanagement
• Learn strategies for developing overall
well being
• Become confident in managing
epilepsy.
There is no fee for this course, but it is
important that you are free to complete
all sessions.
The STEPS programme is available for
people with epilepsy and also for parents
of children with epilepsy.
15
National Conference 2015
Embracing Epilepsy:
Current issues for adults,
parents and families
Saturday October 3rd | Malton Hotel, Killarney
Conference Rates
Early bird (before July 31st)
€20: Epilepsy Ireland members
€30: non-members
Standard rates:
€30: Epilepsy Ireland members
€40: non-members
Includes: Morning refreshments,
Lunch, Conference pack
Speakers:
Bookings
Epilepsy and the family: learnings from research with parents,
families & children
Dr Joan K Austin
Distinguished Professor Emerita, Indiana University School of Nursing
Call us at 01 4557500
Book online at
Epilepsy and the Adolescent
Dr Sophia Varadkar
Consultant Paediatric Neurologist, Great Ormond St Hospital, London
Venue:
The Malton Hotel, Killarney
Current Issues for Adults with Epilepsy
Dr Helena Moore, Consultant Neurologist, Bons Secours Hospital, Tralee
Interactive Workshops:
Workshop for teenagers with epilepsy
Facilitated by Dr Marcia Ward, Clinical Neuropsychologist, Headway
Services & Niamh Jones, Community Resource Officer, Epilepsy Ireland
Health Issues for adults with epilepsy
Facilitated by Sinead Murphy, Epilepsy Specialist Nurse, Beaumont
Hospital/Epilepsy Ireland & Sandra Moloney, cANP Epilepsy, CUH
Parenting children and teens with epilepsy
Facilitated by Maria Keegan, Paediatric Neurology Clinical Nurse
Specialist & Dr Marcia Ward, Clinical Neuropsychologist, Headway
Specialist Nurse Appointments: available by reservation
epilepsyconference2015.eventbrite.ie
Located opposite railway station.
Special room rates available from
the Malton at 064-6638000.
Wheelchair accessible. Parking
available.
See www.epilepsy.ie for more info
Supported by grants from:
GlaxoSmithKline
Cyberonics
www.epilepsy.ie
01 4557500
www.facebook.com/epilepsy.ie
@epilepsyireland
[email protected]
CHY: 6170