Epilepsy News
Shining a light on epilepsy
Epilepsy Ireland Issue 65 Summer 2014
Epilepsy
Deaths
Register for
Ireland
In This Issue:
• Epilepsy Research Update
• STEPS new epilepsy selfmanagement programme
• Safety planning for the home
contents
Note from the editor
3 Epilepsy Deaths Register
for Ireland
Welcome to the Summer edition of
Epilepsy News. National Epilepsy Week is
just the corner, a busy time for everyone.
4 STEPS new epilepsy selfmanagement programme
As mentioned in our last issue we continue
our theme of personal safety with a Safety
Planning tool for the home on page 8;
we hope you find it useful. Other items of
particular interest include the Support &
Training in Epilepsy Self-Management or
5 Yea or Nay? - Should You
Watch Yourself Having a
Seizure?
6 Run for Life by Peter Phelan
8 Personal safety in the home
Epilepsy Toolkit
STEPS Programme, page 4. We hope to
start these programmes later this year. For
the very popular personal story series we
travel to County Waterford, you will find
Peter Phelan’s very moving story on page
6.
Also don’t forget to make a note of this
year’s National Conference, see item below.
Date for your diary
10 Epilepsy research update
11 NAI report on health cuts
12 News updates
Epilepsy Ireland National Conference 2014
13 Fundraising
‘Epilepsy: Safety and Risk’
14 Regional news and events
Alexander Hotel, Fenian Street, Dublin 2.
October 11th 2014, 10.30am – 4.00pm.
Keynote Speakers (& Epilepsy Experts):
Dr Aidan Neligan, Queens Square, London.
Prof Henry Smithson, University College
Cork.
Plus workshops: Self-management and risk
Q&A with epilepsy nurses for parents &
people with epilepsy
‘Have Your Say’ - epilepsy debate
Early bird bookings now being taken
contact EI for further details
Full details in next issue.
Epilepsy West
Seminar for Health Professionals
Epilepsy Ireland wishes to improve
awareness of epilepsy at all times
but especially amongst the medical
community. At present the HSE National
Clinical Lead for Epilepsy is rolling out a
new programme for epilepsy across the
country. The Western regions are amongst
the areas particularly targeted by the
clinical lead.
This meeting will be of special interest
to GPs, specialists and advanced nurse
practitioners in epilepsy as well as all
primary healthcare staff treating patients
with epilepsy.
Speakers:
Dr John Lynch, Consultant Neurologist,
University College Hospital Galway.
Professor Mike Kerr, Clinical Professor, Institute of Psychological Medicine and
Clinical Neurosciences, Cardiff University
Dr Liz O’Mahony, Consultant Paediatric
Neurologist, Barringtons Hospital, Limerick.
249 Crumlin Road,
Dublin 12.
Tel: 01 4557500
Fax: 01 4557013
Email: [email protected]
Web: www.epilepsy.ie
Registered Charity Number: 6170
Design and layout by
What Box? Creative.
Printed by Doggett Print & Design
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Dr Christine Linehan, Lecturer, School of
Psychology, University College Dublin.
Dr Michael Hennessy, Consultant
Neurologist, University College Hospital
Galway.
Dr Kevin Murphy, Consultant Neurologist,
Sligo Regional Hospital.
Professor Henry Smithson, Chair of General
Practice, University College Cork.
Topics:
Epilepsy – where do stand now?
The next generation in epilepsy treatment
Epilepsy & Intellectual Disability – how
does it fit in?
The outlook for children with epilepsy
The need for accurate prevalence and
incidence data for epilepsy
The best AEDs, do we know what they are?
Treatment options – are we using the best
ones?
How can we improve primary care for
epilepsy?
Epilepsy Deaths Register for Ireland
Staff, trustees and supporters (including EI CEO Mike Glynn) of SUDEP Action at the House of Commons reception to launch the Epilepsy Deaths
Register (EDR) for the UK on 4th June 2013.
The Epilepsy Deaths Register for Ireland will be launched during
2014. The aim of the register is to work with researchers to help
with the prevention of epilepsy deaths and in the understanding
of Sudden Unexpected Death in Epilepsy (SUDEP).
In June of last year the UK Epilepsy Deaths Register (EDR) was
launched at the Houses of Parliament in Westminster by SUDEP
Action (formerly Epilepsy Bereaved), the charity which has
done more in the area of epilepsy deaths both in the UK and
internationally than any other organisation. Epilepsy Ireland
has successfully worked with SUDEP Action since the 1990s
and the launch was attended by Mike Glynn of Epilepsy Ireland.
Since the launch, more than three hundred bereaved families
and others such as coroners have accessed the EDR to report
details of the death of a loved one. Due to the success so far
of the EDR, Epilepsy Ireland have been in active discussions
with SUDEP Action to discuss partnership working in Ireland
so that an Irish Epilepsy Deaths Register could be established.
These talks have proved very successful and an Epilepsy Deaths
Register for Ireland will be established later this year. Funding for
this project was raised by the family and friends of the late Alan
Gallagher through the annual Tour De Gaggs cycle from Cork
to Roscommon. The family have agreed that the funds which
they worked so hard to raise can be used to fund this essential
new work. Separately, funding has now been awarded to SUDEP
Action to work with Epilepsy Ireland to help establish the
Epilepsy Deaths Register for Ireland (EDRI).
The National Epilepsy Care programme for Ireland (led by Dr.
Colin Doherty) estimates that there are 100-150 epilepsy deaths
in the country each year. Only 61epilepsy deaths were recorded
in recent CSO national death statistics, suggesting a lack of
awareness and under-reporting of epilepsy deaths in Ireland.
Reported epilepsy deaths have increased. This is not a surprise.
Today investigators in Ireland should be better informed about
SUDEP and other epilepsy deaths but we greatly fear that this is
not always the case. Problems identifying epilepsy deaths that
have happened and lack of access to information make research
into epilepsy death very difficult and expensive.
Research teams all over the world including Ireland are slowly
finding out more about SUDEP and other epilepsy-related
deaths. Nevertheless there is still much more work to be done.
Every person who reports an epilepsy-related death will help
the research. They will bring our knowledge one step closer to
finding the answer to SUDEP and other epilepsy related deaths.
That is why Epilepsy Ireland has partnered with SUDEP Action
to set up the Epilepsy Deaths Register for Ireland. In the UK,
the EDR is endorsed by the government and promoted by
professional and patient organisations to provide:
• single point for reporting deaths
• reports on information provided
• support for anyone wishing to help research into SUDEP and
epilepsy deaths
• coordination of involvement in research
The SUDEP Action Epilepsy Deaths Registry team has:
• over 50 years’ combined expertise in SUDEP and epilepsy
deaths
• experience involving people in research
• led the last National Sentinel Clinical Audit of Epilepsy-Related
Deaths.
Prof. Henry Smithson from University College Cork and research
teams at Sheffield University and King’s Health Partners provide
research support. Our expert advisory includes international
experts in SUDEP, epilepsy deaths and in registry development.
Jane Hanna, OBE of SUDEP Action highlighted the importance
of the register commenting that:
“Registers of epilepsy death are a vital new development
in work on prevention across the world. SUDEP Action and
Epilepsy Ireland have worked together on SUDEP Awareness
since the 1990s and the Epilepsy Deaths Register for Ireland
partnership is a major landmark on this journey”.
The priority for EDR for Ireland in the first year will be to raise
awareness of SUDEP and epilepsy-related mortality and
maximise registrations. Bereaved families will be invited to
register information; take part in a survey of their experiences
and be asked to consent to further contact from researchers.
Professor Henry Smithson, University College Cork and Brigitte
Colwell, University of Sheffield will analyse the information from
Ireland and will compare the data with the UK figures. The
Epilepsy Deaths Register for Ireland will make its initial report in
2015.
3
STEPS - new self-Management Programme for People with Epilepsy
Whether the courses are specific for a group who share a
common condition, or general to all conditions, there have been
great outcomes and results of these programmes. Evidence
shows that there can be reduced emergency admissions,
reduced health distress, improved health behaviour and status
and many other positive outcomes relating to increased quality
of life.
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.
Getting the right medication can be a major breakthrough on a
personal level – a chance to regain control and get on with life.
However, even with controlled seizures, managing to live with
the condition in the longer term can require lifestyle changes
and a steep learning curve to find a balanced lifestyle and learn
about wellness in a new way.
For some people with epilepsy, depression, anxiety, emotional
difficulties and quality of life issues also present themselves.
Many people with epilepsy share with us that they don’t know
others with epilepsy, and have not had the opportunity to share
their experiences and learn from others – they deal with their
epilepsy in isolation from others.
What is the NEW Epilepsy Ireland SelfManagement Programme?
Epilepsy Ireland has 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.
Helping people to develop wellness
Society moves very fast nowadays, and regardless of any specific
health condition, people are feeling more challenged with
life issues and stress, loneliness and isolation has become a
common norm. It is important in broader society that we learn
more about how to cope with our lives, how to stay healthy, and
how to find a more ‘holistic’ form of living that incorporates our
‘whole’ selves. When you have a health condition to deal with,
as well as all the other pressures of life, it is not always easy to
find the ‘balance’ in life and some support in finding ‘your way’
though developing skills and tools to manage, can be useful.
What is Self-Management?
Everyone with a health condition ‘self-manages’ that condition.
‘Self-management’ simply refers to what people do on a day
to day basis to manage their condition and cope with their life.
Most of what happens for a person with epilepsy happens in
daily life – at home and in the community, rather than in the
healthcare setting. It is important that people are supported to
‘actively’ self –manage – find positive pathways for living with
the condition rather than ‘passively’ managing – feeling that
there is little to be done to improve quality of life.
Do Self-Management Programmes Work?
Courses and programmes to help people to ‘self-manage’ (to
manage a chronic condition) have become very popular, mainly
because they have been proven to work. This finding applies to
both condition-specific programmes (e.g. arthritis, heart disease
and diabetes) and general programme for all chronic conditions
(e.g. Chronic Disease Self-Management Programme).
4
Is this programme for me?
This programme is an opportunity for people with epilepsy to
come together and learn from each other, sharing their own
experiences. Often we have things to share with others, and
some people have managed their epilepsy for a long time
and might be able to bring experience for others who are
more newly diagnosed. There is nothing more useful than the
experiences of those who have ‘gone through’ what we are
‘going through’. In the future, we plan to develop volunteer
mentors, who will co-facilitate this programme with our staff.
Whether you are a person who is more newly diagnosed, or
someone who has mastered your epilepsy and your life, we
would encourage you to come onto the STEPS programme.
Check the website or contact your local Epilepsy Ireland office to
find out the times and dates of the STEPS programme nearest
to you.
Yay or Nay - Should You Watch Yourself Having a Seizure?
actually shouting ‘Oh God! Oh God!’ I
walked through a neighbouring office
while doing it...they thought the workload
was getting to me. I couldn’t remember
the shouting; I never do remember that
part.”
Epilepsy News columnist Maria
Carty-Mole contemplates another
issue – whether or not those who
lose awareness during a seizure
should film their episode and
watch it afterwards.
“Oh God no, I look terrible! Take it again.”
These are words that we’ve all heard
when photos are being taken of people
(they are also being said more nowadays,
thanks to fear that images will end up on
Facebook). Unless the whole nation is just
faking modesty, the majority of us don’t
really like looking at pictures of ourselves.
And more often than not, these photos
are taken at social events, when we are
dolled up and dressed to look our best.
So why on earth, then, would we want to
expose ourselves to images showing us
when we are at our weakest point?
Such an idea had never even occurred
to me until one day my sister offered
to film me having one of my complex
partial seizures. My initial reaction was
one of shock horror: NO! The silver lining
for those of us who lose consciousness
during a seizure is that we’re not the
ones who have to witness the event; it’s
others who get the joy of watching it.
Our embarrassment when we come back
around is probably a lot less than it would
be if we had witnessed the limb-shaking,
noise-making, blank-staring process
ourselves.
One argument for the out-of-body
cinema experience might be curiosity.
Surely it’s worth feeling a little
embarrassed, if you finally get to see what
everyone else is talking about? Well there
are many relevant films on YouTube, and
provided that each one has the patient’s
consent to be aired to the public, it’s a
harmless way to get an idea as to what
your type of seizure might look like. If you
want to see a seizure, why not just watch
someone else’s?
The truth is, however, that most of us do
not have exactly the same sort of seizure.
Neurologists have been known to request
that patients film their seizures, as the
noises made or the body movements
like hand signalling can help locate the
epilepsy within the brain. It also means,
of course, that neurologists can scrutinise
seizures themselves and don’t need to
rely on descriptions from observers. For
those who are living by themselves and
have nocturnal seizures, it can also be a
chance to find out what actually happens
when they have an episode.
As well as being useful for analysis
afterwards, a seizure video can be helpful
beforehand, when used in preparation.
A film of a child having a seizure can be
shown to teachers and babysitters, so
that should a seizure occur they will know
what to do and what to expect.
It takes some courage to watch yourself
having a seizure, because that’s not the
real you rocking back and forth; it’s not
the you that everyone knows and loves.
But perhaps we can only come to accept
it when we face it and see ourselves on
camera. I’m not quite brave enough to
do so right now, and Ann-Marie feels the
same way: “To be honest I don’t think I’ve
reached that level of courage just yet,”
she says. “But a huge well done to anyone
who has!”
Yay or Nay…what do you say?
Yay:
“I have had myself recorded before…
it wasn’t the easiest thing to watch but
I was glad I did, because I saw what
others saw.”
Alan
“The neurologists thought it was a
great idea to record myself. It has
been a huge help to them and they
encouraged me to keep it up.”
James
Nay:
“I think we are better off not watching.
Maybe the less we know the better.”
Amanda
“I would only advise it if you are strong
enough, because it is really hard seeing
yourself in a situation like that.”
Edward
Names have been changed at participant’s request.
Even if we don’t lose consciousness, what
actually happens can be very different
from what our memory would have us
believe. Ann-Marie felt a seizure coming
on in the office at work, so she quietly and
subtly made her way to the bathroom
and hid there until she recovered. Or
so she thought. “As I walked out I was
5
Run For Life
Personal Story by Peter Phelan, Co. Waterford.
During this time my seizures had become more frequent due to
the early mornings, late evenings and the stress that goes with
school. It wasn’t uncommon for me to have a seizure eating my
breakfast; waiting for or on the bus and might I add it’s not very
nice when you are twelve miles from home and have a seizure
in front of strangers.
I was 17 and life had changed from a wonderful childhood to
a woeful young adult life. I had discovered the demon drink –
an escape from reality and a good time or so I thought but I
also found it provided me with a major trigger for seizures, the
only excuse I have is I was young and stupid. It took six years
but I eventually decided enough was enough and kicked that
particular habit out of bounds. That summer I had begun a
trade, my first real venture in the real world, as a sheet metal
fabricator. I lasted 9 months. The days were long, lots of overtime
and lots of seizures. I had always wanted to be a tradesman,
a professional at what I did but I had to run to the toilet, the
canteen or anywhere I wouldn’t be seen to hide something that
wasn’t my fault. Then two mornings in succession I was caught
in a seizure by the manager as he turned the corner to open up.
I got the call later that day and the bad news.
There’s always somebody worse than me. That has been my
motto for 31 years. I was born with epilepsy so to me it’s part
of my makeup and will always remain that way. I had my first
seizure at the tender age of just two. I was sent to Crumlin
Hospital in an ambulance after falling and hitting my head off a
kerb as I walked ahead of my mother. I had a brain haemorrhage
according to those in the ambulance, luckily for me it didn’t turn
out that way.
My childhood was pretty normal; I did all the things other kids
did - only better. Even though I was taken out of playschool
after a week due to seizure frequency, as the years passed and
I moved into primary school they really were the best years of
my life. I had energy to burn and life couldn’t be better. Never
wanting to go home after school I would have to be sent for, I’d
stay out with my friends kicking ball, playing hurling and was
constantly active. Looking back now the reason I was so active
and competitive is because I was better than them in more ways
than one.
In the summer of 1995 while in Tramore I played the arcade
game Sonic the Hedgehog. Anyone old enough will remember
a row over a lack of warning concerning flashing images, the
game was later withdrawn. On the way home the seizures
started and continued through the night. That was my first
experience of cluster seizures.
School and College
I began secondary school full of confidence and hope for the
future. My parents met with the principal and vice principal and
outlined my condition, how epilepsy affected me and what to
do in the event of a seizure.
6
In 2001 I started the Training for Success (TFS) course in Sligo. If
I’m honest I was so unstable at that stage the only place I should
have been was home. I met a few wonderful friends and still
have fond memories of the year. I played on the fresher’s and
senior hurling team and we reached an All-Ireland final where
Tipp IT beat us. After TFS I got a full time job as a baker in my
hometown but as before it was blighted with seizures morning,
noon and night but I struggled on.
One day while with the nurse to have my bloods checked she
asked how my epilepsy was and if I was attending anyone.
Within four weeks I was in Cork University Hospital. I had an MRI,
then a video EEG. I had three seizures over two days and both
sets of results were sent to Beaumont to be examined.
Fast forward to 2008, I’m going through the same procedures in
Beaumont only more strenuous and then out of nowhere I hear
the word “surgery”. Is this for real? I could be seizure free this
time next year. Was I young and naive, thinking nothing could
go wrong? I think so but went I for it full steam ahead. I wanted
to be rid of this noose around my neck.
My Surgery Diary
May 5th 2009: I had an extra temporal lobectomy. First night, no
seizure and then like a kick in the teeth night two – shattered
dreams. Three months later and with the results of biopsy of the
damaged tissue and continuation of seizures, more surgery and
stricter examinations were pencilled in.
June 8th 2010: I had an occipital lobectomy performed, another
six hour operation but with the risk of losing the sight in my eye.
This was a tougher decision to make – I cried myself to sleep the
night before. In the end I lost the peripheral vision in my left eye
and the operation was unsuccessful.
Frustration mounted. I knew how much work the doctors,
nurses and neurosurgeon had invested in me and to this day
I am forever thankful to all of them but the next question was
“what can we do now?”
Peter (centre) with his father, Peter and mother Assumpta
August 11th 2011: I had a Vagus Nerve Stimulator implanted to
help get my seizures under control. It failed.
Three operations and three unsuccessful outcomes; was I bitter,
angry, resentful and sorry? I was angry that it didn’t turn out the
way I’d hoped but I was never bitter or resentful, I had given my
all and I’m happy that I won’t ever have to ask myself what might
have been had I said no to the second operation. I was angry,
my vision had been damaged. I now have a curtain like effect
hanging down the outside of my left and the inside of my right
eye which means I only see half of what the normal person sees.
As a result I’ll never drive so it’s a double whammy. I don’t read
anymore as a result, I have to close one eye and it puts too much
strain on the eye.
Fight the fight, run the race
I tried to learn how to swim and I succeeded to a certain degree
but one evening in the pool I felt a seizure coming on and
I panicked, luckily I got out just in time and the next thing I
remember is looking up at two guys asking me was I ok! I was
lucky which is why it’s advisable to always have someone with
you or tell the lifeguard you have epilepsy.
80% of my seizures occur between the hours of 8pm-8am and
I get them near enough every night so it isn’t easy for me to
function to my full capabilities. As the sleep deprivation follows
me through to the next day, so will the remaining 20% of my
seizures. I will always find it difficult to hold down any kind of job
and that for me is the most frustrating thing of all.
honestly don’t know but time will tell and if it comes down to it
I won’t be afraid to drop out because as stubborn as I am, one
thing I’ve learned is you can beat a lot of things in life but you
can’t beat the brain.
Acceptance is a big thing and to be able to accept epilepsy for
someone like me is half the battle. I accepted the fact I have
refractory epilepsy a long time ago. At the moment things aren’t
fantastic for me but I’m used to it.
I try not to let increases in my AEDS to try and control a seizure
spike get me down, as hope gets me from day to day and I
hope someday in the future that I will say “I’m seizure free”. If not
at least I’ll know I’ll have fought a good fight and that’s all that
counts.
I had tried almost every AED for partial seizures, last year a new
drug halved my seizures, however I’m still at around 40 complex
partial seizures a month plus simple partials and clusters.
I started to run marathons in 2008 not because I enjoyed it but I
found it very helpful to clear my head of all the frustration from
the night before. I have run one marathon a year since, except
for 2011 (post VNS surgery) which isn’t bad for a person on 5
different AEDS and after 3 operations. I ran for Epilepsy Ireland
in 2010 and that was eleven weeks post brain surgery, my only
regret is I never did one for the Beaumont foundation.
I would like to take this opportunity to thank all the staff at Cork
UH, Beaumont Hospital and Epilepsy Ireland for all their help and
support. There’s always somebody worse than me!
I am starting a college course in September and it will be
an intensive five days a week schedule. Will I be able for it? I
7
Personal Safety Plan for the Home
Everybody faces possible safety risks in the home and many
accidents can be prevented with careful planning. As a follow
up to the Be Safe, Reduce Risk article which appeared in the last
issue of Epilepsy News, the following safety plan can be used
to assess personal safety throughout the home. It will also help
determine where action may be needed.
In using this safety plan consider:
• what risks might apply
• the type of seizure
when and where it might happen
what hazards there might be
In the Action Needed column put a yes for anything that might
prove a potential risk, and then think about what action you
could take that might remove or reduce the identified risks; the
table will provide some prompts for consideration. Remember
some changes may be easier to make than others.
Location
Hazard
Reduce the Risk
Living Room
Open fires/ stoves
Freestanding TV
Glass tables
Trailing flexes
Radiators
Gas heaters
Freestanding lamps
Large, secure fireguard
Wall mounted is safer
Remove or replace with shatter proof glass
Attach to skirting board
Moulded covers without sharp edges
Remove in case of fall on appliance
Secure or wall mount
Kitchen
Ovens
Hobs
Saucepans
Hot Dishes
Glasses/ceramics
Sharp cutlery
Electrical appliances
Hot liquids
Microwaves are safest
Use cooker guard or rail
Cook on rear rings
Turn handles to rear of hob
Limit carrying, use a trolley
Use unbreakable crockery
Limit use of steak knives
Use cordless where possible
Keep levels low
Bedroom
Beds
Headboard
Soft pillows
Locker position
Lamps
Undetected seizures
Doors
Low level, no bunks
Choose soft padding
Firm ventilated type or none
Move from bedside to limit risk of injury
Wall mounted is safest
A bed alarm can help
Re-hang to open out, leave unblocked
Bathroom
Baths/showers
Avoid baths. Showers are safer
Use a shower chair
Shower when someone is around
Don’t bathe children alone
If using bath, leave plug out and wash with shower hose
Safety plastic rather than glass
Remove or leave open to prevent entanglement
Lower or flat tray
Keep unlocked and hang to open outwards
Attach to walls
Use a thermostat to control temperature
Shower doors
Shower curtain
High shower trays
Doors
Loose mirrors
Hot water
8
•
•
Action Needed
Location
Hazard
Reduce the Risk
Hall
Stairs
Limit use of stairs if seizures are frequent
Use stair gates if wandering is a feature
Throughout
the Home
Glass panels
Coarse carpet
Loose appliances
Loose flexes
Hot pipes
Tight spaces
Candles/cigarettes
Hard flooring
Sharp edges
Heights
Safety glass or clear contact film
Cover with safety matting
Mount on walls where possible
Tack to wall or boards
Conceal with heat resistant foam
Enclose to prevent getting wedged
Avoid using especially if alone
Cover with safety matting
Use child-proof covers or replace
Avoid ladders, attics etc.
Living well with Epilepsy
Epilepsy Ireland is offering FREE Epilepsy Toolkit and Support
Session for people with epilepsy and parents of children with
epilepsy.
This Toolkit has been designed to support people in managing
their epilepsy. It can also be used by parents to manage their
children’s epilepsy. The Toolkit will help people understand the
condition of epilepsy; keep all relevant medical information in
one place and work closely with their medical team.
The support session will provide all the information, training
and support you need when you or your child has been
recently diagnosed with epilepsy. You should contact your local
Community Resource Officer (CRO) to book your Toolkit Support
Session. Contact details for your local CRO can be found on the
Regional News page.
Action Needed
The Toolkit designed and produced by Epilepsy Ireland contains:
• Seizure Management Charts
• Medication Management Section
• First Aid for Seizures
• Medical Team Section
• Seizure Diary
• Safety Action Planning
• Epilepsy Information Checklist
• Resources Section
• Appointments Planner
• Wallet ID for people with epilepsy
• Epilepsy Ireland Services
PLUS: Living Well with Epilepsy a 40 page information booklet.
9
Research Update
diversity that exists in life on earth. But
crucially, these differences can sometimes
influence our health. If a difference occurs
in the code for a protein involved in lung
function, it might cause a condition such
as cystic fibrosis. If it occurs in a protein
involved in cell signalling in the brain, it
might lead to epilepsy.
One of the first grants made by
Epilepsy Ireland under our Research
Funding Scheme back in 2009 was to
Dr Cavalleri and colleagues for their
work in identifying genetic predictors
of epilepsy. Below Dr Cavalleri
outlines his team’s work over the past
four years and explains some of the
key findings to come from the study.
What is DNA?
Our bodies consist of billions of cells,
and the building blocks of these cells are
called ‘proteins’. Indeed all life on earth
is made up of proteins and millions of
proteins exist on the planet. We read
about proteins in health books and hear
about them on TV but where do proteins
actually come from?
Well, our bodies can make proteins on
demand. Contained within cells from all
living organisms including humans is a
substance called DNA. This incredible
molecule represent a code made up of
four different letters (‘A’, ‘T’, ‘C’ and ‘G’). The
code is over 3 billion bases in length. If
you joined all of the DNA in your body
and stretched it out end-to-end, it would
reach over 700 million miles, that’s to the
sun and back about 4 times! Critically, this
code contains the instructions for making
all the proteins our body requires. It is the
book of life, and we each have our own
copy.
We each have our own, unique copy of
DNA because our DNA is slightly different
from our parents, with each generation
the code changes slightly. Any two
individuals will be 99.9% identical at the
level of their DNA, but the 0.1% of the
code that differs is critical as that, at least
in part, explain the wonderful
10
It’s only in the last decade that scientists
have been able to read our DNA in its
entirety. Indeed, the first human genome
(we refer to all of a persons DNA as their
‘genome’) was sequenced in 2002, as
part of the Human Genome Project.
This was the result of a massive global
effort that cost almost 3 billion dollars
and took the best part of 10 years to
complete. But since 2002, technology has
changed dramatically. Today, researchers
can sequence all of your DNA in a day,
at a cost of just $3,000. But although
it’s relatively easy to generate all this
information, interpreting what it actually
means is a massive challenge. Researchers
are currently working to address this
challenge.
epilepsy treatment. We then generated
extensive genetic profiles on all
participants. When we analysed the data
we observed some interesting signals but
nothing that clearly predicted chronic
refractory epilepsy. More powerful and
focused studies are required.
The funding has contributed to
important parallel discoveries
But the work has helped establish
important resources that can now be
integrated with collaborative efforts
with scientists in other countries that
are seeking to extend the research but
using much larger numbers of patient
participants. This should improve the
power of the study to detect genetic
effects considerably.
Indeed the resource established by this
study has already helped contribute
to parallel discoveries in epilepsy. For
example, Epilepsy Ireland support has
helped us identify a gene type that is a
predictor of severe skin-related adverse
reactions to carbamazepine (1). We hope
What did we set out to do in this this test might be integrated to the
clinic in the future, to help avoid these
particular study?
severe, but extremely rare, reactions. We
Epilepsy Ireland partnered with the Health have also helped to show that common
Research Board (HRB) to fund researchers genetic variation in a gene called SCN1A
at the Royal College of Surgeons in Ireland is a risk factor for mesial temporal lobe
epilepsy with hippocampal sclerosis
in their efforts to better understand the
genetics of very difficult to treat epilepsy. (2) - the same gene was previously
known to be important in epilepsy with
Around two thirds of patients with
a strong family history such as GEFS+
epilepsy will respond well to medication
or Dravet Syndrome. Epilepsy Ireland
and manage to control their seizures.
funding has also helped us contribute
However, the remaining one-third of
to the identification of genetic variation
patients continue to experience regular
as predictors of the volume of the
seizures despite trying several different
hippocampus (a brain structure known
drugs. Prof. Delanty, Dr. Doherty and
to be important in epilepsy)(3). Together,
Dr. Cavalleri (of Beaumont Hospital, St.
these discoveries represent small but
James’s Hospital and RCSI) together
with collaborators, set out to identify
key regions of our DNA that might be
important in the development of difficult
to treat epilepsy. If you can identify such
regions you might be able to develop
new treatments that correct or target the
underlying problem.
As part of this work over 400 people
with epilepsy were recruited through
the clinics of Prof. Delanty at Beaumont
Hospital patients and Dr. Doherty at St
James’s Hospital. These patients were
studied very carefully by our clinical
team, so as to prepare detailed, individual
profiles on how each responded to their
significant steps in helping us understand
the biological factors underlying epilepsy.
But perhaps the most exciting discovery
to be supported by the Epilepsy Ireland
funding was the recent finding that
genetic changes in a gene called TDP2
can cause a very rare but difficult to treat
and debilitating seizure disorder (4).
Together with collaborators from the UK
and Netherlands, we showed that genetic
changes in this gene can lead to the
development of seizures. The gene itself
helps control how DNA is coiled. When
a gene is producing a protein, the DNA
containing that gene needs to be relaxed
(or unwound) and vice-versa when it is
not. If TDP2 is damaged, we lose some of
that control over DNA coiling which can
lead to differences in the levels of certain
proteins in the brain, which can lead to
epilepsy.
We need your help!
Genetics plays an important role in
epilepsy and recent technological
breakthroughs in research are allowing us
to understand this role with more clarity.
But there is still a lot of work to do and we
need your help. If you are under the care
of Prof Delanty or Dr. Doherty, and have
any or a combination of a) a strong family
history of epilepsy, b) difficult to treat
epilepsy or c) experienced side effects
from anti-epileptic drugs please contact
our Research Nurse, Lisa Slattery, at 087983-1043 or email [email protected]
References:
1. McCormack M et al., HLA-A*3101 and
carbamazepine-induced hypersensitivity
reactions in Europeans. N Engl J Med. 2011
Mar 24;364(12):1134-43.
2. Kasperaviciute D et al,. Epilepsy,
hippocampal sclerosis and febrile seizures
linked by common genetic variation around
SCN1A. Brain. 2013 Sep 6.
3. The ENIGMA Consortium. Identification of
common variants associated with human
hippocampal and intracranial volumes. Nat
Genet. 2012 Apr 15;44(5):552-61.
4. Gómez-Herreros F, et al TDP2 protects
transcription from abortive topoisomerase
activity and is required for normal neural
function. Nat Genet. 2014 Mar 23.
Report shows impact of cuts on people with
neurological conditions
years, or getting no service at all, including 74% for personal
assistance services, 70% for respite care and 55% for speech
and language therapy.
The study highlights alarming changes since a similar study was
conducted in 2011. For example, in 2011, 11% said they did not
have access to a specialist nurse but this is now 20%. In 2011,
16% said they had difficulty accessing psychology services and
this is now 24%. Figures for physiotherapy, occupational therapy
and home adaption services show similar trends.
Almost half of respondents had to give up work as a result
of their condition, whilst some 40% were paying privately for
physiotherapy, neurology and aids and equipment.
A survey conducted by the Neurological Alliance of Ireland
(NAI) of 600 people living with neurological conditions and their
families showed that it has become more difficult to access a
range of basic services and supports over the past three years.
Speaking at the launch of the report in the Mansion House, Chris
Macey, chairman of the NAI, which represents 30 organisations
in the neurological sector including Epilepsy Ireland said that
“these are worrying findings which show that people with
neurological conditions are being hit extremely hard by the
cumulative impact of cuts to community services and to
benefits that have a massive impact on their quality of life”.
The findings, announced in March during Brain Awareness Week
highlight again the impact of on-going cuts in health, benefits
and entitlements on top of historical underdevelopment of
neurological services.
NAI is calling on the Government to show commitment to
prioritising neurological services, to make no further cuts to
entitlements and to invest in rather than further cut community
services.
Among its findings are that:
• 42% had their medical card withdrawn.
• 68% of respondents had been affected by changes to the
mobility allowance
• 64% were affected by cuts to home care packages
• In addition, there were high rates of people finding it more
difficult to access community services over the last three
A number of prominent politicians speaking at the launch
outlined their commitment to neurological issues and to
highlighting the findings of the report within Leinster House,
including Deputies Denis Naughten and Caoimhghín Ó Caoláin
and Senators Marie Moloney and Jillian Van Turnhout.
Caoimhghín Ó Caoláin TD and Alexis Donnelly who has MS at the
launch of the NAI report in March.
http://bit.ly/1cMPsyb
11
News update
People with autoimmune
disease have increased risk of
developing epilepsy
Irish researchers detail
psychosis rates in epilepsy
A new study published in BMC Psychiatry,
conducted by Prof. David Cotter and
colleagues from the RCSI has found
that people with epilepsy are nearly
eight times more likely than people
without the condition to experience
psychosis. The findings are based on a
systematic review of 58 studies. They
show that 5.6% of all patients with
epilepsy and 7% of those with temporal
lobe epilepsy have comorbid psychosis.
Postictal psychosis (psychosis occurring
immediately following a seizure) was
lower, at 2%. The authors conclude that
“adequate recognition and treatment
of psychosis in epilepsy is essential for
patient management because of their
considerable burden in morbidity and
quality of life.”
A new American study published in JAMA
Neurology, has found that patients with
an autoimmune disease have a 3.8-fold
increased risk of developing epilepsy.
Autoimmune diseases examined include:
type 1 diabetes, psoriasis, rheumatoid
arthritis, Crohn’s disease, antiphospholipid
syndrome, myasthenia gravis and coeliac
disease. The study also found that
17.5% of the epilepsy patients studied
had at least one autoimmune disease.
The risk was greater among children
than adults. Findings also revealed
that autoimmunity patients on certain
immunosuppressing medications had a
lower risk of developing epilepsy. “These
findings suggest a new approach to
treating seizures, one based on quieting
the immune system,” said the study’s lead
author Dr Kenneth Mandl.
http://bit.ly/1ew4CTw
Wearable epilepsy app on the
way?
New SUDEP research
In a recent study, US researchers
explored the role of cardiac arrhythmias
in SUDEP, using an animal model of
Dravet Syndrome (DS). Heart muscle
cells in the animals with DS were found
to be more excitable than ‘normal’ ones,
and their electrical activity (needed to
generate heart beats) was impaired. ECG
recordings showed that animals from the
DS group had a range of abnormalities
in heart rhythm – including prolonged
beats, extra beats, variable beats and
heart spasms. Two of the DS animals
suffered spontaneous death during
the study, both following an episode
of marked arrhythmia. These findings
strongly suggest that abnormal heart
activity can contribute to sudden
unexpected death in epilepsy. Research
into the link is continuing.
http://bit.ly/1hpsgGk
North West Neurological
Institute opened
http://bit.ly/1ghgM6X
Social problems in young
people with epilepsy
A new Swedish study has explored
the long-term social skills of children
with epilepsy. The study looked at the
development of 31 children, following
them for 10 years after they were
diagnosed in 1997. When diagnosed,
all the children were classified as well
functioning. A third of the children
still had active epilepsy in 2007. This
group showed attention problems and
physical symptoms, including pain. Of
the youngsters aged under 18, over
85% were having problems at school.
Meanwhile, 16% were taking more than
one medication for their epilepsy. The
research team found that this increased
the possible risk of attention problems
and aggression.
http://bit.ly/1hpgzzd
12
The concept wearable system that may help
track and manage seizures
Professor Tim Lynch and Dr Kevin Murphy, head
of the new North West Neurological Institute.
A new ‘wearable’ device being developed
by American technology company
Artefact may soon be available to help
people with epilepsy. The device consists
of a sensor that can be worn as a patch or
clipped into a watch bracelet along with a
smartphone app that can perform tasks
including monitoring vital signs leading
up to, during, and after a seizure; alerting
carers; offering instructions; and recording
of seizure data. Using this data, the app
will be able to “learn” what conditions or
vital signs could indicate a potential
seizure is imminent and alert the person
or their carer. The device is currently in
testing but is expected to be generally
available within two years.
A new specialist North West Neurological
Institute has opened in Sligo to treat
patients affected by a wide range of
neurological conditions including
epilepsy. The unit is based in a dedicated
building in Molloway House at Sligo
Regional Hospital and is supported by
Elan, the HSE and the hospital. A not-forprofit initiative, the Institute is modelled
on the Dublin Neurological Institute at
the Mater Hospital and is being headed
up by Dr Kevin Murphy, Consultant
Neurologist. The NWNI will work with
existing services in the region and plans
to provide in time, a full range of
neurology services including outpatient
support, diagnostics, an information
centre, complementary approaches and
access to specialist nurses.
http://bit.ly/1gaxPCW
Fundraising - Upcoming Events
Mini Marathon
Book your place now at the next Epilepsy Ireland quiz night with
Rick O’Shea. Call Ashley at 01 4557500 or [email protected].
Limited to 40 teams only.
We’re looking forward to seeing all our mini-marathon
supporters on Bank Holiday Monday June 2nd for the Flora
Dublin Women’s Mini Marathon. Thank you to everyone who has
registered including Rose of Tralee Haley O’Sullivan and RTE’s
Blathnaid Treacy. We hope to see you all our participants at the
Dandelion, St Stephens Green for refreshments after the race.
Contact Glenna at 01 4557500 for further details.
Church gate collections
Payroll Giving
A big thank you to everyone who takes the time to organise and
take part in our collections and thank you also to everyone who
responded to our recent request for volunteers. If you would
like to volunteer in your own local area, we’d love to hear from
you – contact Noeleen at 01 4557500 or check out upcoming
collection dates on our website:
Payroll giving is a great way to support your favourite charity as
it provides a regular and reliable income to support the charity’s
work.
Epilepsy Ireland is working with two companies that promote
payroll giving to companies in Ireland, and the schemes are
open to anyone who wishes to make a monthly donation
through a payroll deduction.
For more information please contact Glenna at 01 4557500 or
you can sign up at: www.givingonline.ie. Any donors received
from this form are completely free of charge to us.
For more information on the second provider please go to:
Brainteaser Quiz Night
http://bit.ly/1lHZS5R
www.stcpayrollgiving.co.uk/sustain
Thank you
race in the Phoenix Park. Mick took part
in the race in memory of his dear brother
Matthew who died in 2012 and ran the
10k in a pair of runners that belonged to
Matthew. Mick, along with his family and
generous band of supporters who were
behind him al the way raised over €3,000.
Well done Mick and a big thanks to
everyone who made a donation. Pictured
with Mick are his wife Olivia and sons
George & Oliver.
Putting his best foot forward
A special thank you to Mick Reilly who
put his best foot forward in the recent 10k
of the charities to support through their
recent snooker tournament that pitted
local club members against some of the
top players in the country.
Fermoy Snooker Club
Thank you to William Hughes and
everyone involved with Fermoy Snooker
Club who chose Epilepsy Ireland as one
13
Thank you
Wedding Congratulations
Swimming for a mile
Congratulations to Irene and Alan O’Brien
who were married recently and chose
to remember Alan’s later brother Peter
with some of our roses and special
cards for the tables. If your special day is
coming up and you would like to make a
contribution to Epilepsy Ireland in lieu of
table favours, please get in touch with us
at 01 4557500.
Thank you to Eimear O’Mahony who
completed the Swim-a-Mile challenge
recently in 47 minutes 29 seconds, raising
€520 for Epilepsy Ireland in the process.
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, 10am - 6pm;
Thur 1.30pm - 6pm
Paul Sharkey, Training &
Communications Manager
gave a short presentation
outlining Epilepsy Ireland
services while Miriad
Kavanagh, a member of
Epilepsy Ireland gave her
personal story from first
diagnosis, her experience of
epilepsy surgery and how
her family has supported her.
She also spoke of some of the
difficulties she experienced in
her working life when people
discovered she had epilepsy.
This is the third occasion that
Epilepsy Ireland has taken part
in the programme and the
response from the audience of
about 150 students was very
positive.
RCSI Patient Contact
Programme
In March Epilepsy Ireland took
part once again in the Royal
College of Surgeons, Ireland
Patient Contact Programme
designed to allow student
doctors to meet patient
support organisations and
their members.
14
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
Thank you to:
• Expert Hardware and CRH for
their recent donations
• Helen McGrath and family for
their generosity in donating €500
• Daniel Doona & the Beann
Edair Bridge Club who made
a fantastic donation of €900
recently. We really appreciate
the very kind gesture.
• Nell Conway, Noel Hennessy and
all the staff at Lakeregion Medical
in New Ross for choosing us as
their Nominated Charity for 2014.
We’re thrilled at being chosen
and we look forward to working
with you throughout the rest of
the year.
• Mary Kavanagh and family who
donated €300 to Epilepsy Ireland
in lieu of flowers following the
death of her brother Thomas
from SUDEP.
Upcoming Events
Kilkenny: Support Group
Epilepsy Ireland Office,
Kilkenny
Tuesday May 20th and Tuesday
June 24th, 7.30pm.
Waterford: Support Group
Cheshire Home, John’s Hill,
Waterford
Wednesday May 21st and
Wednesday June 18th
7.30pm
Please confirm with Joan if you
intend going as dates listed
are provisional.
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.
Dermot Byrne, Margaret
Bassett Midlands CRO, Joe
Moran and Paddy Doheny who
attended a very informative
epilepsy evening seminar, with
presentations by Sinead
Murphy Community Epilepsy
Specialist Nurse, Beaumont
Hospital and Geraldine Dunne
EI National Information
Officer.
Upcoming Events
Tullamore: Parents Support
Group Meeting
OCIL Clonminch Rd Tullamore
Tuesday May 29th, 7.00pm.
Portlaoise: Epilepsy
Information Stand
During Rose of Tralee Regional
Finals
Heritage Hotel, Portlaoise
May 29th; 30th; 31st
Athlone: Outreach Services
PWDI, Sean Costello St
Thursday June 12th
10.30am -3.45pm
Banagher: Outreach Service
Venue TBC
Thursday June 19th
10.30am – 4.00pm
Portlaoise: Outreach
Service
CIC Main St Portlaoise
Thursday June 26th
10.30am – 4.00pm
Longford: Outreach Service
CIC Longford Shopping Centre
Thursday July 17th
10.30am – 4.00pm
Outreach Service is by
appointment only, phone
Margaret for appointment
Tullamore: Teachers
Information Evening
OCIL Clonminch Rd Tullamore
Thursday September 18th
7.00pm
Booking essential, phone
Margaret
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
Roscommon: Support
Group Meeting
Cuan Aire Family Centre,
Castlerea, Co. Roscommon
Wednesday,May 21st
6.30 - 8.30 pm
Guest Speaker Mr Francis
Keenan will give a personal
account of Living with
Epilepsy.
Clonbur: Youth Adventure
Day
Petersburg Outdoor Education
Centre, Clonbur, Co. Galway
Saturday June 28th
For young people with
epilepsy aged between 18 and
25 years
For more information, contact
Edel at Epilepsy Ireland Galway
Tel: 091 587640.
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.
Killarney: Support and
Information Evening
For parents of children with
epilepsy
Epilepsy Ireland Office,
Killarney
Tuesday May 20th
10.30am
Killarney: Support Group
Epilepsy Ireland Office,
Killarney
Wednesday June 18th
11.00am
Tralee: Rose of Tralee
fundraising raffle
Rose of Tralee Dome
Tuesday August 19th
Please contact Kathryn if
you are available to sell raffle
tickets at this event.
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
Upcoming Events
Galway: Epilepsy
Information Session
For people with Epilepsy
and Parents of Children with
Epilepsy
Westside Resource Centre,
Seamus Quirke Road, Galway
Tuesday May 20th
11.00am – 1.00pm
Epilepsy Nurse Specialist
will be in attendance.
Refreshments will be provided.
Roscommon: Outreach
Service
HSE PCCC Centre, Golf Links
Road, Roscommon
Wednesday May 21st
2.00pm - 5.00pm
Outreach service is by
appointment only, phone Edel
for appointment.
Upcoming Events
Organisers of Limerick
Wellness Day Wellness Day
Conference, April 2014, (left to
right): Billy Rice (Parkinson’s)
Carol McKenzie (MS) Anna
Kelly (Epilepsy Ireland) Alan
O’Connell (ABI Limerick) Elisa
O’Donovan (Headway)
Kerry
Contact: Kathryn Foley, Community
Resource Officer, Epilepsy Ireland,
9/10 The Paddocks. Ballydowney,
Killarney, Co. Kerry. Tel: 064 6630301.
Email: [email protected] . Office
Hours: Mon- Fri 9am - 2.30pm.
Cork: Support Group for
Parents of Children with
Epilepsy
Bishopstown GAA Club
Wednesday May 7th
7.30pm
Cork: Epilepsy Information
Evening on
Imperial Hotel, Cork
Wednesday May 14th
7.30pm
Guest Speaker will be Sinead
Murphy, Clinical Nurse
Specialist.
There is no charge but places
must be pre booked by
contacting Niamh in the Cork
office.
University Hospital:
Epilepsy Information Stand
Cork University Hospital
Tuesday May 20th
10.00am – 4.00pm
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: Outreach Service
Epilepsy Ireland Office, Sligo
Tuesday May 13th and
Wednesday May 21st
11.00am - 12.30pm
Please call Agnes to make an
appointment and to confirm
your attendance:
Sligo: Epilepsy For
Everyone
Clarion Hotel, Sligo
Tuesday May 27th
7.30pm - 9.30pm
Guest Speaker: Sinead Murphy,
Community Epilepsy Specialist
Nurse.
This event is open to all people
with epilepsy, their families,
carers, and health professionals
working with people with
epilepsy.
Sinead will also be available for
one to one appointments in
the Clarion Hotel.
Wednesday 28th May
10.00am - 12.30pm
Please call Agnes to make an
appointment.
Donegal: Paediatric Issues
in Epilepsy
Glenfin Room, Station House
Hotel, Lower Main Street,
Letterkenny.
Friday June 13th
Guest Speaker: Sue Crowley,
Advanced Nurse Practitioner
Candidate in Epilepsy,
RNP, RCN, RNID, Children’s
University Hospital, Temple
Street, Dublin.
10.00am - 12.30pm for parents
of children with epilepsy.
2.00pm - 4.30pm for Health
Professionals.
Places are limited so please call
Agnes to book a place.
15
NEW
Self Management
Programme
Be your own epilepsy expert
Sharing Experiences
Interactive Group Environment
Peer Learning
12 Regional Locations
THE PROGRAMME INCLUDES
•
•
•
•
•
•
•
Understanding self management
Life with epilepsy
Understanding medical care
Managing seizure triggers
Lifestyle and safety
Using support systems
Developing communication skills
•
•
•
•
•
•
Managing emotions
Understanding diet, exercise and sleep
Stress management tools
Building self confidence
Managing negative thinking
Future life planning
LO C A L CO N TAC T D E TA I L S
www.facebook.com/epilepsy.ie
@epilepsyireland
Email: [email protected]
www.epilepsy.ie
Head Office: (01) 4557500
CHY number: 6170