SUMMER 2021 - Epilepsy South Africa
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
SUMMER 2021
Index
Editorial by Tim de Villers 03
50 Million Steps for Epilepsy 04
Q&A 06
My Life with Epilepsy 09
A Family’s Perspective 10
God, make Yourself real in my life 12
Epilepsy and Successful Surgery 14
My Year 16
Student Living with Epilepsy 17
Flame of Courage Award 18
Temporal Lobe Lobectomy 19
My Dream as a Laboratory Scientist 20
A Challenging Year 22
Valproate - Facts 24
The Verster Family 28
Advocate for Students Living with Epilepsy 30
2
Editorial
By Tim de Villiers
never give up on your Dreams, have
Faith and Believe in yourself.
Epinews is Epilepsy South Africa’s
bi-annual newsletter, highlighting
experiences, challenges, stories of
inspiration of others, updates from
some of our Bursars and contains
information and a great “Questions
& Answers” section.
Thank you to those whom have
contributed to Epinews and thank
you to the dedication of Epilepsy
South Africa staff, volunteers, youth
I trust you are all well. ambassadors and all of you who
have contributed to improving the
Its Summertime again and a New Year lives of people with Epilepsy.
Dawns, and it is a good time to take
a break and sit outside to enjoy this To our team, co-editor, Lesley Donnelly
Summer edition of Epinews. (in Ireland), Bronwen Assink, Gresham
Africa and Marina Clarke, National
2020 was a Year of Great Challenges Director, for their respective roles in
with Covid-19 Lockdown, which has had sourcing and support.
a significant impact on all of us and the
economy of our beautiful country. Now, We trust you will find this publication
in the Second Wave, please continue inspiring, and we encourage you to
practicing extreme precaution, stay safe share your life story, achievements,
to lessen the impact on all of our lives. research, etc. in our future editions of
this publication. Remember – Sharing
It is not easy living with Epilepsy but your experience provides inspiration
2021 is a time to clear the desk and and guidance to others.
set new goals, no matter how big or
small, let’s work at achieving them to Wishing you a Blessed 2021, Keep up
further personal growth, gratification and the great work and Stay Safe.
strength. Whether your personal goal Feel free to contact Epilepsy South
is to become a professional, a waiter, a Africa National Office on 0860EPILEPSY
tradesman, starting a community garden, or email info@epilepsy.org.za.
doing something extreme, or whatever Articles for submission can be sent to
makes you happy, remember to remain nationaldirector.no@epilepsy.org.za or
focused on what you set your mind on, lesley.donnelly@outlook.com
3
4
International Epilepsy Day
& National Epilepsy Week
International Epilepsy Day is a joint serving the needs of persons
initiative of the International Bureau with and affected by epilepsy; and
for Epilepsy (IBE) and the International e) Raise funds.
League Against Epilepsy (ILAE). Epilepsy
South Africa is the South African Chapter This year’s theme internationally is 50
of the IBE. Million Steps for Epilepsy. The World
Health Organisation (WHO) estimates
The Day was launched in 2015 and that there are approximately 50 million
is celebrated annually on the second people with epilepsy worldwide. This
Monday in February. This year the Day Campaign invites people to take a step
falls on 8 February 2021. in celebration of each of these 50 million
people. Starting on Monday, 4 January
International Epilepsy Day is celebrated and ending on International Epilepsy Day
in more than 120 countries worldwide. It 2021 (Monday 8 February) we’re walking
highlights the problems faced by persons to raise awareness, to improve visibility
with epilepsy, their families and carers, and increase understanding of epilepsy.
but also celebrates the achievements of During this period we invite people to
persons with epilepsy. add their steps to the global total on the
campaign website (www.50millionsteps.
International Epilepsy Day is aligned with org).
a strategy to advocate for appropriate Epilepsy South Africa is extending this
legislation to guarantee the human rights theme over the next 12 months, i.e. until
of persons with epilepsy and to empower January 2022. We will have a different
people with epilepsy to maximise their focus each month as epilepsy cuts across
quality of life. all aspects of a person’s life.
In South Africa this is followed by National Flame is the official mascot of Epilepsy
Epilepsy Week. On the one hand the South Africa and originates from our logo
Week highlights the problems faced by which includes a flame. This signifies
persons with epilepsy, their families and bringing the light of understanding and
carers, while on the other celebrating the acceptance to end the darkness of myths
achievements of persons with epilepsy. and misconceptions about epilepsy. We
are reminded of the fact that a flame can
The 2021 Campaign aims to: ignite other sources of light without losing
its own light.
a) Link with the international theme –
50 Million Steps for Epilepsy; This year Flame is
b) Give hope and drive motivation to stepping into the real
overcome the negative impact of world through augmented
2020 and celebrate what can be; reality. To join in the
c) Raise awareness about epilepsy and fun, keep an eye on our
persons with epilepsy in pursuit of Facebook page;
inclusion; (www.facebook.com/epilepsy.southafrica)
d) Inform people about Epilepsy South and invite Flame into your world.
Africa as the only national organisation
5
Q: I’ve seen adverts for some electronic library.
interesting events and campaigns on
the Epilepsy Soutth Africa Facebook • Social development services:
page. How can I get involved? Counselling for individuals, groups,
families and caregivers, health and
welfare services, daycare facilities
A: The best way to get involved in the and stimulation groups, child and
activities of Epilepsy South Africa is by
youth development, lifeskills training
joining the Branch in your area. You can
and food security projects.
find the nearest Branch by calling our
tollfree number which will automatically
• Residential care for adults at six
connect you to that Branch. The tollfree
centres (two in Springs and one
number is 0860EPILEPSY (0860 374
each in Knysna, Parys, Elandsdoorn
537) and is free of charge. If there is
and Dullstroom).
no Branch in your area you can join
as a national member by emailing
• Community development for
info@epilepsy.org.za. The national
collective action and generating
membership fee is currently R100/
solutions to common problems,
person/year.
including economic, social,
environmental and cultural issues.
Q: What does Epilepsy South Africa do
for people with epilepsy? • Economic development through
protective workshops, open
A: Epilepsy South Africa offers a range labour market placement and self-
of services through our Branches to employment initiatives.
persons with and affected by epilepsy
(e.g. family members, friends and • Skills development through training
colleagues). programmes, learnerships and
on-the-job training as well as the
• Advocacy and human rights: We Epilepsy SA Educational Trust which
are vigorous advocates for the provides bursaries to students with
realisation of the rights of persons epilepsy for tertiary education.
with epilepsy. As such we offer
training programmes focused on Q: I’ve read about the International
developing self-advocacy, public Bureau for Epilepsy. Is this the same as
education and awareness initiatives Epilepsy South Africa?
to inform and educate people about
epilepsy, human rights support
services in the fight against stigma A: The International Bureau for
and discrimination and information Epilepsy (IBE) is the global body while
services via our website, social Epilepsy South Africa is the national
media, talks, training and an chapter of the IBE in South Africa.
6
The IBE was established in 1961 and epilepsy I need to take medication
has grown to almost 140 chapters in and hoped that there would be
over 100 countries. It is recognised herbal remedies I could consider.
as the international umbrella body
representing national epilepsy
organisations with a specific interest A: While a 2003 study showed that a
in improving the social condition and few herbal remedies used in traditional
quality of life of people with epilepsy Chinese, Japanese Kampo, and Indian
and their carers. The IBE vision is a Ayurveda medicine have anticonvulsant
world where ignorance and fear about effects, there are no randomised, blind,
epilepsy are replaced by understanding controlled studies to support their
and care. benefits or risks. Some homeopathic or
herbal remedies can help with seizures,
Epilepsy South Africa was established in but some can worsen seizures. This
1967 and has six Branches: holds true for any traditional or cultural
remedies as well.
• Western Cape (Cape Town);
• South Cape/Karoo (Knysna); When considering homeopathy and
• Eastern Cape (East London); herbal remedies: ALWAYS discuss these
• Gauteng (Springs and ooptions with your doctor before making
Johannesburg); changes or adding to treatments. If your
• Free State & North West doctor believes this to be beneficial
(Parys); and with your regular seizure medicine
• Mpumalanga & Limpopo (Dullstroom you should never take more than the
and Elandsdoorn). recommended dose. If you develop any
new side effects, don’t ignore these—
call your doctor immediately. NEVER
Q: My daughter was diagnosed with
substitute a herbal medicine for your
epilepsy at the age of four (4) and is
regular seizure medicine as this could
now fifteen (15) years old. Is there a
result in increased seizures and even
difference in medication for adult and
life-threatening events, such as status
paediatric epilepsy?
epilepticus.
A: While many of the same medications Give a full report about every herb
are used for treating both adult and or other over-the-counter medication
paediatric epilepsy, the combination you are taking to your doctor during
and dosage vary greatly. Many children every visit. Similarly, make sure you
tolerate monotherapy better and are tell the homeopath or herbalist about
able to manage the treatment schedule all prescription and non-prescription
better. The treatment of paediatric medicines you take.
epilepsy must be monitored closely to
ensure that the changing physiology of A reputable homeopath or herbalist will
the child is taken into account. be aware of interactions that may be
harmful.
Q: I believe in living a healthy lifestyle
and try to avoid anything harmful to my Q: A friend suggested yoga to help
body. This includes eating healthy and me with seizure control. Will this work?
exercising regularly. As a person with
7
A: People often use yoga and • Seizures that begin at a
meditation to relax, unwind, practice young age or many years of living
mindfulness and reduce stress. Some with epilepsy
people with epilepsy have found that
relaxation techniques can ease tension • Missed doses of medicine
and stress, and reduce stress-related
seizure triggers. However, some • Drinking alcohol or drug abuse
techniques can result in a state of deep
relaxation which may trigger seizure You can reduce the risk of SUDEP by
activity. If you want to try relaxation learning more about it. For example, ask
techniques, be sure to speak to your your doctor for information or discuss
doctor who will be able to advise you this with someone at Epilepsy South
based on the specific of your diagnosis Africa. The golden rule is to take your
and treatment. If you try yoga, meditation seizure medicine as prescribed. If you
or other forms of relaxation, be sure to are adhering to your treatment but
let your therapist know that you have still have seizures, discuss options for
epilepsy, what medications or other adjusting the medicine, epilepsy surgery
medical treatments you use and what to and diet therapy with your doctor.
do in the event of a seizure.
Other possible steps to reduce the risk
Q: I recently found out that Disney star of SUDEP may include
Cameron Boyce died of epilepsy, but
never knew that this could happen. It • Learn how to better control
would seem he died of something called your seizures with epilepsy self-
SUDEP. What is it and how can I protect management programs.
myself?
• Take good care of yourself.
A: SUDEP is an acronym for Sudden • Be aware of and avoid any
Unexpected Death in Epilepsy. As the potential seizure triggers whenever
name suggests this is a sudden and possible. Keep a record of things
unexpected, non-traumatic and non- that occurred before a seizure
drowning death of a person with epilepsy. in a seizure diary (such as
There is no toxicological or anatomical illness, tiredness, stress, missing
cause of death. medications, and where and when
The causes of SUDEP seem to be the seizure occurred).
multifactorial and include respiratory,
cardiac and cerebral factors as well as • Talk to your doctor about having
the severity of epilepsy and seizures. your heart checked (cardiac
However, the main risk factors for SUDEP evaluation) to rule out any heart
are: problems. This is especially
important if the diagnosis of epilepsy
• Uncontrolled or frequent seizures is not certain or the seizures are not
controlled.
• Generalized convulsive (also called
tonic-clonic or grand • Be seizure safe. Make sure family
mal) seizures and co-workers know what to do
for seizure first-aid, take extra
• Frequent night time seizures precautions around water, including
swimming and bathing.
8
My Life with Epilepsy
By Oupa Tshabalala pandemic has taken away my only
means of survival due to the government
directive of social distancing and the
shut-down of businesses. The worst was
that I could not access a business permit
to sell my products during the lockdown.
It is a weakening experience because
I am expected to eat before taking my
epilepsy medication. Some other days I
would sleep without food, which brings
a lot of stress and triggers severe and
uncontrolled seizures.
I also find it difficult to always put on
In 1971 my parents discovered that
a mask because it suffocates me and
I had epilepsy, just two weeks after
triggers seizures. My life became poorer
birth. I attended the mainstream school
without any means of an income. I
till grade seven (7). The condition
tried submitting but have never been
became worse to such an extent that
successful with SASSA applications.
my brain could not take it anymore. I
However, I reapplied for a disability
failed the grade and decided to quit.
grant before the Covid-19 lockdown
However, the mercy of God was with
but was turned away on the date of
me throughout my life. I was employed
the appointment to see a doctor for my
and got married in 1993; I was blessed
medical assessment. My situation at
with three children. Unfortunately, in
home deteriorated with a lack of income
2017, I went through a very traumatic
and proper supervision. I had to call my
experience. My wife instituted divorce
ailing mother to come and stay with me
proceedings due to my uncontrollable
so that we take care of each other.
seizures. The other aggravating
circumstances was that she was
Message of support
influenced and persuaded by other
outside forces, which led to the demise
My advice to people with epilepsy is that
of our marital union.
first and foremost, accept your condition,
love yourself, and take your treatment
My life during Covid-19
as prescribed by the doctor. I can assure
you that your medication will take good
As a person with epilepsy I struggle to
care of you. Take care of yourself, try not
find employment, hence I survive as a
to stress, avoid unnecessary arguments
street vendor, by selling foodstuffs. I
that lead to anger, do not be too excited
tried to register my company with the
and avoid drinking alcohol. If you take
Department of Trade and Industries
care of yourself, you can lead a healthy
without any success. The Covid-19
life with your epilepsy condition.
9
A Family’s Perspective
6 seizures every month. With no medical
aid, we were forced to collect medication
at our local hospital and that was when I
decided to draw up a simple spreadsheet
in order to have a clear layout of seizure
activity. On one visit to the hospital in
October 2019, without our knowledge,
the dispensary short-supplied me with
Tegretol.
To our amazement, everything seemed
to change. Without telling me that there
From My Perspective… wasn’t enough Tegretol, my husband
slowly weaned me off of it. It could’ve
I have been struggling with Petit Mal gone horribly wrong but it didn’t. Today
epilepsy for over 21 years. I was taking I am Tegretol-free and seizures are now
a wide variety of medication, including minimal. They are more like Absence
Lamictin and Tegretol. Blood levels were seizures instead. In total – since October
checked on a regular basis. No matter 2019, I have only had 22 seizures. This I
how much they changed the dosage on a remarkable change. Even my fatigue,
the medication, nothing was working and moodiness, etc have eased.
the seizure lengths and intensity was bad.
This caused a lot of fatigue, mood swings, Triggers for my seizures were: heat,
depression, just to name a few. flickering candles & strobe lighting,
stress, irritation, insomnia, etc. Since my
For many years I was diarising my seizures seizures are more under control the only
and easily found a pattern. Telling my doctor thing that seems to trigger my seizures
about this, did not help as he didn’t want to are hormones around the time of my
listen to what I had to say. In January 2012 I cycle.
was admitted to hospital when my seizures
were out of control. On looking at my diary There are 2 things that I must stress to
he immediately noticed the pattern. It turned all patients… No epilepsy patient should
out that my seizures would just stop medication without the approval
before or mid-cycle. of the doctors but in my case, I had no
choice. The other thing that I strongly
Now that I am much older (43 years old), my suggest is that each person should keep
hormones have settled. Although the length a journal of seizure activity and this will
of my seizures shortened, the medication in turn assist your doctor in the correct
still didn’t help. I was having a minimum of treatment.
10From Henry’s Perspective… As I reflect the last fifteen years I have
got used to her having seizures, and
When I first Bronwen, it was a scary when began to figure out what could be
she would have a seizure. I did not know possible triggers, I found that cooked
what to expect and how long the episode processed tomato products I add to
was going to last or when was the next one sauces is a possible trigger. I still need to
was going to hit! As then she could have up prove this.
to four in one afternoon. In the beginning it
was difficult to work through it. From Emily’s Perspective…
Over time I got used to her having a seizure, When my mommy has a seizure, I feel
and when she began to babble I knew scared even though I know what to do
get her out of harm. I would always try when she has one. It is more scary when
and get her to bed as that was the safest I am alone with her, and no one is here
place. Before we found the right doctor her with us. When my mommy has a seizure, I
seizures and recover would last anything make sure that she is in a safe place and
from thirty minutes plus, then she would that there is no dangerous things around
have no energy to function normally, and I her. I also make sure that she does not
caused stress. This continued for over three go walking around by herself otherwise
years. she could have an accident and hurt
herself. I try my best to get her to sit on
After a setback that had Bronwen in hospital the ground or climb into bed.
her attending physician was out of town
and a locum was over seeing his patients, Once my mommy has fully recovered
he scrutinized her seizure journal and saw from a seizure, I won’t leave her alone
the pattern as to when seizure activity were and act like her.
at their worst, this doctor has just relocated
to Benoni and was getting his practise When my mommy has a seizure, I make
established. sure that she is in a safe place and that
there is no dangerous things around her.
After a few months we did see this doctor I also make sure that she does not go
and presented him a spreadsheet of seizure walking around by herself otherwise she
activity and confirm the pattern and began could have an accident and hurt herself. I
to working of the correct cocktail of meds. try my best to get her to sit on the ground
I saw the change as then her seizure were or climb into bed.
less and not as intense in length, when she
had recovered and continued to function Once my mommy has fully recovered
normally I would tell her she has a seizure from a seizure, I won’t leave her alone
she would often deny it. With the correct and act like her bodyguard because I
meds it was not as stressful. love her so much.
11God, if You are real, make
yourself real in my life!
By Melusi Nhlapo
My significance, the purpose driven life,
holding to my faith during the hardest
times; I felt my life did have a meaning!
My relationship with my family was
not strained by my seizures, as they
have accepted my condition. They are
supportive, loving and willing to assist me
in times of need. Although there are myths
and misconceptions about a person with
epilepsy in our black culture, my family is
my pillar of strength.
Unfortunately, many young people and
It was on the 25th December 2017 when some adults do not know that there will
God seemed not to make sense in my be times in every person’s life when
life. Around 06:15hrs in the morning, I circumstances or when one is born with
experienced an unbearable headache, a condition, does not seem to make
lost my senses, I started smelling some sense. We think about ways to squirm out
strange things and bleeding through my of circumstances or conditions, blaming
nose. I had my first seizure whilst trying ourselves, however, you must stay
to get out of bed. I asked myself why committed; you will come through in due
does this disease, rejection, death and course.
sorrow seep into my life? It just does not
seem fair! Why me? In March 2018, I resigned at work because
of severe headaches and regular seizures.
After a few months of being admitted One day the seizure happened when I
(twice) at the hospital since the 25th was inside a lift, which I felt was very risky.
December 2017, I consulted several People I worked with had an indigenous
doctors and was diagnosed with African culture belief about my seizures.
epilepsy. However, various tests were They however did not treat me differently
conducted, i.e. blood tests and a brain after those incidents.
scan, but they could not find the cause
of my epilepsy. Having seizures during church meetings
was one the most embarrassing moments
It has been said that “what you believe ever in my life.
is how you behave”. I felt like I was in a
rat race; I asked myself what on earth This affected my reputation.
am I here for?
12The relationship with some of the saints God’s grace sustained me because I was
was also affected, as they believed that healthy and in good physical strength.
when someone has a seizure during a
service, that person must be possessed The attitude we choose will change or
with a certain spirit. determine our lives and relationships as
we learn to consistently display the right
In March 2020, the country went into outlook in every situation.
national lockdown because of Covid-19.
Health departments and all other I choose to live positively and change my
departments were affected. life for the good. I wish to connect, live
passionately, have healthy expectations
The pandemic challenged me as a person and be optimistic.
with epilepsy, as our medical centres were
not functioning properly. Transportation I pursue excellence and live an examined
and the way we were treated at medical life.
centres was also a challenge.
I am grateful with my life because every
There was a time I was scheduled to see breath, every word, and every move, is a
a doctor for check-up, but I was given step to more life.
only medication as a chronic person; the
appointment was rescheduled. Another
month the centre exceeded the number of
consulting patients and I was sent home.
13Epilepsy and
Successful Surgery
By Lee Rzepkowski would be done regularly, and tests
made for medication, for more ideas as
to what was causing everything.
By seeing Neurologists regularly,
just like the hospital, and after
concentration with and from the
medical experts, it seemed all
connected to epilepsy. At the age of
eleven, I was then sent to the Queen
Elizabeth Hospital, also to Edgbaston
in Birmingham where my epilepsy
was confirmed, and work soon began
again.
My name is Lee and I have my own
property at Great Barr, Birmingham,
EEG testing (a test that detects
England. I am now 49 years of age
electrical activity in one’s brain using
and there are many things seen
small, metal discs (electrodes) attached
but plenty more I would like to see
to one’s scalp), was done. One’s brain
with the hope of having so much
cells communicates via electrical
interest and knowledge of epilepsy
impulses and are active all the time,
which is wider than believed after
even when one is asleep. This activity
experiencing being awake as well.
shows up as wavy lines on an EEG
recording.
The neurological problem of epilepsy
has never stopped me from achieving
Eventually, after more concentration
so much. I explain further some of
and not being able to find out what
the ways this has gone to improve
the cause of the damage was causing
my health since all the childhood
this neurological condition, I was sent
visits back and forth to one of the
to Denmark Hill for major tests where
children’s hospitals in Birmingham,
more diagnoses could be found.
my home city and the second biggest
Electrodes were inserted into my scalp
city outside of London, which is
for 48 hours (both day and night) to
central.
detect where the problem was coming
from.
Itchy nerve feelings regularly came
into my stomach, bringing my
More serious discussions and thoughts
voice to rise after ten beats soon
occurred trying to find out the cause
after reaching the age of eleven.
of my epilepsy, and I was taken up
Something happened causing me
and down from the West Midlands
to be studied more, now going onto
to London. On regular occasions,
Aston University for more scans; this
medication testing was done amongst
14numerous other things and eventually, A few years went on with tests, and in
I was offered brain surgery. The last 2007, more CAT and MRI, plus EEG tests
thing I remembered in the hospital were done. After undergoing tests, my
was: ‘Lee, we are going to let you have Surgeon and Neurologist came into the
a sleep, and shall wake you in the room waiting for me. When my family
morning’. and I arrived, my Professor who did the
surgery in 2001 explained something
Well, I woke up the next day and unexpected; they could do surgery again
looked in the mirror! To my horror, the so my surgeon explained what could then
left side of my skull was massive and be achieved.
so swollen. Everything went well after a
few days, and I left the hospital wearing He said, ‘Lee, we can erase the auras and
a cap (not showing my swollen head), reduce the seizures/epilepsy; the only
but still proud of what I had achieved problem would be a reduction in your
with such confidence in and out of memory, or we can erase the epilepsy
hospital. I had successfully undergone totally, but your memory would be erased
surgery! totally.’ I decided to do what he said and
erase the auras and reduce the epilepsy.
Another visit was made in 2001, not
for tests but for my second form of The shock was that the surgery needed
brain surgery. After tests of many to be done whilst awake. If asleep, it
kinds, MRI scans etc. surgery was done would be too dangerous. The operation
(King College) whilst I was awake, so went ahead and after a few hours, brain
sensations thought to be auras could surgery was done. A brain tumour was
be made. present on the left temporal lobe on
the Hippocampus, but everything went
One of my Neurologists stood asking well, and the non-malignant tumour was
me questions concerning the auras, removed.
and when I was going to have one,
suddenly I said, ‘I am having one Today, the seizures are much improved,
now’. The sensation got to nine, then my memory is still good, I am in superb
stopped. The surgery was completed shape, and one big success is that the
and after the operation whenever I surgery has taken away the Auras!
went around the sensation or aura
reaching nine heart beats, then
stopping, that was the distance we had
undergone with surgery.
15My Year
By Shana Warner
What a challenging year it has been, I never understood the COVID-19 situation
but I am grateful for the challenges this until I experienced it. I had to heal and pull
pandemic has taught me! through, without looking back. Staying
positive during this situation is difficult as
Firstly, let me start off with the joyful everything around you seems ‘locked’ and
news. negative. Luckily, it is all over now.
I finally ‘tied the knot’ from Ms. To Mrs. Yes, I lost a ‘loved one’ due to it, but
This is a day I will never forget, as it through the sadness, I am grateful for the
brought so much joy and blessings. small gifts and blessings.
During the Level 4 Lockdown, my family As time goes by, 2020 is becoming better.
and I got isolated, and sadly I lost my My studies are still moving, and learning is
Mother-in-Law during this time. I am becoming more exciting each day.
grateful that I survived the COVID-19
and overcame all the trauma. It was ‘Thank you, Epilepsy Trust, for giving
a challenge, as I went through lots of me the opportunity to better myself
emotions and having to study at the professionally!’
same time.
16Experience of a Student
Living with Epilepsy
By Matthew Petersen schedule made for myself to help me
adhere to the amount of time required
This year was an unexpected knock for studying, I found myself very
to the norm which has caused many quickly getting distracted easily with
significant changes in many different what was going on outside. At first,
areas not only across the country but this did present itself to be anything
also around the world. It has been up but a distraction every once in a while
to us as individuals to successfully which I used to draw myself away
adapt to the new climate which from my studies and educate myself
plagues our world. with what was happening in the world
outside, however as the days went on,
With the rapid spread of the I started to pay more attention to what
Corona Virus many peoples have was happening to the world than my
struggled to adapt to these quick academic studies, but even then did
ongoing changes as the world is still not think I would be affected by it.
undergoing adjustment.
As the second month of lockdown
As a learner with Epilepsy these drew to an end, our academic
changes have greatly influenced institutions began to start online
my learning experiences this year, classes and make material available
as well as my learning experiences for us online, to make long distance
going forward for the future. With the learning possible so that learners who
beginning of the Lockdown came were not able to keep up with the
a complete absence of any sort of current material, could catch up.
academic guidance as academic
institutions where completely shut This years’ experience has been an
down. interesting one in that it has forced
people to adapt to a changing world
As almost all information is electronic, with a fluctuating climate. I myself have
this presented a problem to me as a had to learn to discipline myself to
student with photosensitive epilepsy, study consecutively every day.
as the amount of time I can spend
daily on electronic devices is greatly I will be able to use the experiences
limited as opposed to the normal I have gained this year for the rest of
individual. This challenge, however, my life, as well as from an academic
was overcome very easily by using a environment.
structured study schedule to correctly
balance the amount of studying that Even though the situation is a
was done every day. depressing one, any change to better
yourself should be accepted gladly and
Throughout the second month of the lessons taken to heart. This way
lockdown, even though I had a we will not repeat the mistakes that we
have already improved on.
17Flame of Courage Award
All nominees must have shown courage
and determination and be a role
model for other persons with epilepsy.
Achievements can take any form, but
must reflect the ability to overcome
challenges, resolve and resilience.
Nominees for the national award must
be members of Epilepsy South Africa
regardless of whether they reside inside
or outside the country.
Nominations may be made by any
member of Epilepsy South Africa.
Each nomination for the National Flame
The Flame of Courage is an award
of Courage must be submitted on the
instituted by the National Office of
prescribed form available from the
Epilepsy South Africa in March 2016
National Office (info@epilepsy.org.za) by 1
to recognise persons with epilepsy
September annually.
and their accomplishments. The Award
comprises (i) a certificate and trophy
The NEC will select the national winner
(which remains the property of the
based on the nominations received and
winner); (ii) serving as an Epilepsy
announce the winner at the national
Ambassador for a year; and (iii) a
AGM.
cash prize.
As with any nomination process there are
The inaugural Flame of Courage
a few rules:
was awarded to Lavinia Stoffels who
successfully completing her learnership
1. No late/incomplete nominations will
at Epilepsy SA Western Cape.
be accepted or considered.
Tembakazi Babana’s advocacy efforts
2. All nominees must be persons with
in the Eastern Cape also earned her the
epilepsy.
Award.
3. Only members of Epilepsy South
Africa may submit a nomination.
The 2020 winner was Tim de Villiers
This includes Branch and National
for his services to Epilepsy South Africa
members, as well as members
and self-advocacy over more than three
residing outside the South African
decades. Readers will know Tim as one
borders.
of the stalwart editors of Epinews for
4. The decision of the National
many years.
Executive Committee is final.
5. The prize money will only be
Any person with epilepsy may be
transferred into the bank account of
nominated. Winners are expected to
the winner based on the information
support the work of Epilepsy South
provided on the nomination form.
Africa based on mutually agreed
activities/initiatives.
18Temporal Lobe
Lobectomy
By Debbie Flatau I am completely aware whilst it is
happening. I am also still on a lot of
I was diagnosed with epilepsy in epilepsy medication and cannot drive,
2007, after my Mom saw me have a but it is so much better than before.
massive seizure whilst I was sleeping
on the couch. I did not take the whole It has affected my career, however, as
thing too seriously as I seemed fine post my operation I was advised that I
after that; I only experienced one could not go back into the field I was
more. As far as I felt at the time, working in. I worked in management
nothing was wrong. I subsequently consulting, which involved long hours
moved to London in 2008 where I and stressful work. However, applying
lived the young South African life. for less-stressful positions was not
easy as I was seen to be too qualified.
It was trips to Europe, partying late at Since then, I have been in a couple
night with all my friends, and driving of contracts. Currently, I am doing
at times. I slowly began to have administrative work, which is keeping
seizures during the day and had to me busy, but it is not in the field I love.
be sent home a couple of times whilst
at work. I went to different doctors, My passion is in people development.
however, all they mainly did was up I am a qualified psychometrist and
my medication; so, I let it be. have my own small business which I
do assessments through. I have a bit of
Nearly four years’ later, my friend’s experience in this in some of the work
Mom got me an appointment back in that I have done. Reading and hearing
South Africa with my new, amazing about other people’s life stories, I
Neurologist. I flew home for it and realise how fortunate I have been.
stayed in Johannesburg for the week.
I was subsequently advised that I I really want to assist wherever I can. I
needed to move back home as my would love to be involved in projects,
epilepsy was more serious and not support groups and/or just chats. Over
under control. From here, my ‘real the last few years, I have experienced
epilepsy life’ started. The first two many people who feel that epilepsy
things I was told: no more alcohol and is an awkward subject. I have never
no more driving. felt that at all, and I have always told
whoever I have spoken to, that they
In 2013, I had a left temporal lobe can ask me whatever they wish.
lobectomy. Still to this date, I cannot
believe that I had a brain operation! A goal of mine one day is to write a
It has been successful. Even though book. However, everything needs
it has not ‘fixed’ my epilepsy, I no to start small; I hope by sharing my
longer have the massive seizures, personal story as a person with
but just get a ‘funny feeling’ and epilepsy can be the beginning!
19My dream as a
Laboratory Scientist
By Rejaen Botha from courage, the cowardly dog,
to Teletubbies! I was on a high that
nobody could break. As the days flew
by in 2016, I became more aware of
how many people actually had epilepsy
and how many had little faith in ‘us.’
I graduated from High School and
my plans were to go and get my
degree in science to become one of
the youngest successful scientists in
Southern Africa. I was told by multiple
people that going to University was
a ‘bad idea’, seeing that the closest
I was diagnosed with epilepsy at the University was two hours away from
age of 17 and grew up in a very loving home. Nobody would be there to
and caring home (sometimes TOO check up on me, others said that
caring). graduating with a degree in three
years for a disabled person was
When I woke up from my first seizure, ‘unachievable or crazy’ and would take
the first thing I saw around me was up to at least four to five years.
my family with tears in their eyes.
They thought I was dying. The GP I will admit that one of my weakest, but
that handled my case in the hospital also best properties, is being stubborn.
suggested that we should see a I do not let what others define or
Neurologist. disturb me, so I went to University. I will
not lie; it was ‘hard as hell’ being alone
As the days continued, we searched whilst constantly worrying about where
for the best Neurologist, found and when I might have a seizure. I had
him and finally went for a visit in seizures in classes, laboratories, ‘get
2016. To our surprise, I went from togethers’, etc. It seemed that people
an extrovert to someone suffering were extremely cautious and nervous
from depression. I felt I was wasting being around me, and it bothered me
oxygen. Three months went by and that I was portrayed as ‘that girl’.
my parents decided that we should
get a second opinion, just to be sure Luckily, as the days went by, I made
that I really had epilepsy. Yeah… it some good friends that did not really
was! care about my disorder; they rather
wanted to learn more about it. I always
After my ‘second opinion’ visit, I tell the people around me that epilepsy
was put on different medication; it is a part of me, just like brown hair and
was like my world changed scenes blue eyes are a part of someone else.
20Three years later, I graduated with my fundraising event by the time 2021
degree in Science, and had friends arrived. I loved having the feeling of
who I can call family. making a difference.
Most students at University become March, April, May, June and July went
very independent; it gives them by. I have an amazing group of people,
the opportunity to ‘get to know all with epilepsy, sharing their stories
themselves better’. For me, it was a and helping me get in touch with
hard road. I became the ‘true me’, important contacts/businesses etc. for
gained and lost some friends, put the fundraiser. Then August came; I
on weight and lived the normal got an interview for my dream job as a
‘student’ life. For the first time since Laboratory Scientist. Great news!
being diagnosed with epilepsy, I
truly educated myself with the term I was excited but also nervous,
‘Epilepsy’ and all its baggage too, because how do I, as a person with
educating those who also needed it epilepsy, compete with older more
just as I had done in 2016. I became a experienced people going for the
proud Epilepsy Awareness Activist at same interview?
the end of 2017.
I remember them calling me just after
It never really occurred to me that my first interview, telling me that I was
being a person with epilepsy was the youngest to be interviewed that
going to be a big problem in my day. I began to laugh nervously just
professional life. I got so used to the before they told me that I made it to a
people around me acting like normal second interview, and not long after
human beings at the time, that I never that they told me that I got the position!
really knew what strangers thought
of me and my disorder, because I The young ambitious girl from High
rarely got exposed to another world School (with epilepsy) woke up
of people. inside me and now I am currently the
youngest scientist at their company.
At the beginning of 2020 just
after I graduated, I applied for at As happy as I am, I also hate not being
least 15 positions and to my shock able to make progress with my plans
NOBODY was interested. ‘I have the for my fundraising event. It feels like I
references, I have the experience, am disappointing my group of friends
what is possibly wrong with me?’ with epilepsy, because I must put them
on hold now due to me wanting to live
I became so discouraged by the my dream of being a scientist.
thought of not being employed,
that I started to dive more into the I ask myself lots if this was a mistake,
epilepsy awareness movement and simply because I am letting these
what I could do to make a difference. people down who I initially brought
I started to look up contacts from together, but I’m not yet done and
epilepsy organisations that I could hope I will be able to fulfil this plan
be a part of, I spoke to leaders, later on.
multiple non-profit organisations,
and even started my own movement
group with the idea of having a big
21A Challenging Year
By Slindile Manjinji I was scared when the cases of Corona
Virus rose in South Africa, there were
rumours that it only affected ‘white’
people, rich people and people
on medication; even people on
medication were seen to not SURVIVE
if they were affected by COVID-19.
I have never been so stressed and
scared, as I was during this time. I was
literally shaking and feared for my
life, I did not want to study because I
thought I was dying, and even asked
myself why, in the News, they had
Being a student in 2020, was the never mentioned this. I then became
most melodramatic and challenging curious, did my own research and the
year I have ever seen! results were more positive and gave
me hope.
I believe there was a need for 2020,
I truly do; I am not sure whether it’s I found out all the above were just
because I believe a lot in God and rumours! COVID-19 can affect anyone;
the fact that he always has good I just needed to be more vigilant and
intentions, I don’t know. Many good take good care of myself at all times,
things also happened in 2020. i.e. everything was ‘in my hands’. What
a relief this was to me!
2020 took us all out of our ‘comfort
zone’ and put us on edge; being on Things started changing. I had to adapt
edge gives us a different perspective to the ‘new norms’, i.e. studying on my
of everything and helps us to see own at home due to campus being
things we could not or did not see closed.
before.
Lecturers were scared, so were we as
Surviving, just shows us how strong students. Then there was ‘lockdown’.
and capable we are. 2020 helped
me a lot; it boosted my self-esteem, When I first heard that campus
revealed my full potential and would be closed, I thought it was
showed me just how strong I am. academically over this year.
Adapting to always wearing a mask
It assured me that epilepsy did not was the worst. The mask suffocated
take my strength. It proved that I am me, especially when I was walking.
still more than capable. I could not stand it and even told
myself the mask would kill me before
COVID-19 did.
22Being a student with epilepsy was a was running around the house like a
big challenge, but good things about ‘headless chicken’. She was not sure
challenges is that they bring out the what I feared, but she thought I was
best in oneself. It revealed my full afraid of her but not knowing why;
potential by showing how serious every time she spoke, I would just
and dedicated I was. jump, scream, cry and run. She told me
all of this in the morning when I asked
When I first heard that I had to study her why she was sleeping on the floor
on my own, I was so scared I even in my room. I could not remember a
thought of taking a gap year, but then thing that happened the previous night,
remembered that I might lose my until I saw I had hurt my mouth and
bursary. I had no other choice but to myself; she was telling the truth.
adapt. I told myself that I must do this,
I can do this, and let me do this! God The fact that I cannot remember a thing
will never give me challenges that I still stresses me out, it makes me ask
cannot overcome. lots of questions, and the fact I took
my medication the night before going
I did things I would not have done to bed, discourages me to continue
if I was still in my comfort zone, i.e. taking the tablets.
working on last year’s papers way
before exams, communicating with However, what can I say or do?
my lecturers, asking my classmates Sometimes, especially when I am
for help if I didn’t understand, putting studying for exams, I think what could
my pride aside admitting that I did not happen if I get sick at night and blank
understand and more. out again, then all this would be a
waste of time and energy?
On 10th April 2020, at approximately
2.00 a.m. whilst sleeping, I had a This then makes me realise I must
seizure. After that, my Mom says I remain positive, motivate myself and
speak good things about myself!
23Valproate
What are the Facts?
Recent news reports and litigation Valproic acid was first synthesized
highlighted the risk of birth defects in 1882 by Beverly S Burton as an
in women and girls taking sodium analogue of valeric acid found naturally
valproate and the lack of information in valerian.
available. Many women approached
Epilepsy South Africa seeking clarity. For many decades its only use was
in laboratories as a “metabolically
Here are the facts. inert” solvent for organic compounds.
In 1962 French researcher Pierre
What is valproate? Eymard discovered the anticonvulsant
properties of valproic acid while using
Valproate (VPA) and its valproic acid, it as a vehicle for a number of other
sodium valproate, and valproate compounds that were being screened
semisodium forms are medications for antiseizure activity. It was approved
primarily used to treat epilepsy and as an antiepileptic drug in 1967 in
bipolar disorder and occasionally France and has become one of the
migraine. It prevents seizures by most widely prescribed antiepileptic
stabilising excessive electrical activity drugs worldwide.
in your brain. It is thought that this
is achieved in two ways; firstly by
increasing the activity of a natural What is the situation in South Africa?
‘nerve-calming’ agent called GABA in
the brain and secondly by preventing In September 2018 the National
electrical signals from building up in Department of Health issued a notice
nerve cells in the brain. (EDP082018/04) about the safety of
sodium valproate during pregnancy,
Valproate exists in two main given that the Standard Treatment
molecular variants: sodium valproate Guidelines (STGs) and Essential
and valproic acid without sodium. A Medicines List (EML) recommends its
mixture between these two is termed use “for various indications at all levels
semisodium valproate. It is unclear of care”.
whether there is any difference in
efficacy between these variants. The risks are outlined in the notice
which states that “sodium valproate
It is on the List of Essential Medicines should thus be avoided in pregnancy
of the World Health Organisation and in women of child-bearing
(WHO) and is available as a generic potential. In cases where there is no
medication. Brand names include suitable alternative to sodium valproate
Epilim (South Africa and Australia), in this population group, the women
Depakine (France) and Depakene must be fully informed of the risks and
(USA and Canada). a reliable form of contraception must
be used continuously.”
24The STGs and EML was updated to Two or three babies in every 100 born
include the following caution: “Children to women in the general population will
born to women taking valproic acid are have a birth defect. However, in women
a significant risk of birth defects (10%) taking valproate the risk increases to
and persistent developmental disorders about 10 babies in every 100 born. Birth
(40%). Valproic acid is contra-indicated defects can include;
and should be avoided in pregnancy and
women of child-bearing potential.” • Spina bifida (a condition where the
bones of the spine do not develop
The Department also noted that sodium properly).
valproate should not be stopped
abruptly. All medicine switches should • Face and skull malformations,
be done in consultation with a clinician. including cleft lip and cleft palate.
Women who conceived while taking This is where the upper lip or bones
sodium valproate should be referred for in the face are split.
genetic counselling and detail ultrasound
at 20 weeks. • Malformations of the limbs, heart,
kidney, urinary tract and sexual
What are the risks of taking valproate organs.
during pregnancy?
Your child’s development can be
While valproate is an effective medicine affected as he/she grows up. Between
used in treating both epilepsy and 30 and 40% of children born to women
bipolar disorder, women and girls should taking valproate during pregnancy may
only take this if nothing else works. This experience developmental problems.
is because valproate can seriously harm
an unborn child when taken during Although the long-term effects are not
pregnancy. However, this does not known your child may:
mean that you should stop taking your
medication unless your doctor tells you • Learn to walk and talk later than
to do so. others.
Taking valproate during pregnancy • Have lower intelligence than other
can seriously harm your unborn child children of the same age.
and pose greater risks than with other
medicines for epilepsy and bipolar • Exhibit poor speech and language
disorder. These risks are present even skills.
with smaller doses of valproate, but the
higher the dose, the higher the risk. • Experience memory problems.
Your child can be affected in two ways; • Be more likely to have autism,
firstly by birth defects when the child autistic spectrum problems and
is born, and secondly, problems with show signs of Attention-Deficit
development and learning as the child Hyperactivity Disorder (ADHD).
grows up.
25What should I do? I am starting treatment with valproate
Sanofi (manufacturers of valproate Your doctor will explain to you why he/
products) advises as follows: she feels valproate is the right medicine
for you and tell you about all the known
• Always use effective contraception risks.
when taking valproate.
If you are too young to become pregnant
• Use contraception for the whole your doctor should only treat you with
time you are taking valproate. valproate if nothing else works. It is
important that you and your parents/
• Do not stop using the contraception caregiver know about the risks of
at any time. valproate when used during pregnancy.
This is so you know what to do when you
• Your doctor will recommend are old enough to have children. You or
effective contraception for you your parents/caregivers should contact
to stop you having an unplanned the specialist once you experience your
pregnancy. first period (menstrual cycle) during
valproate use.
• Schedule an urgent appointment
with your doctor if you think you are If you are already old enough to become
pregnant. pregnant your doctor should only
treat you with valproate if you are not
• Consult your doctor if you are pregnant and using contraception. He/
thinking about having a baby, and she will ask you to perform a pregnancy
do not stop using contraception until test before starting valproate, or
you have done so. thereafter if needed.
• Never stop taking prescribed This is to make sure you are not
medicines unless your doctor tells pregnant. Always use effective
you to. contraception when taking valproate,
and do not stop using the contraception
You will need to review your treatment at any time. Your doctor will recommend
with your doctor regularly (at least each effective contraception for you to make
year). During the annual visit, your doctor sure you do not become pregnant. You
will ask you to read and sign a Risk will need to review your treatment with
Acknowledgement Form to make sure your doctor regularly (at least each year).
you are aware and have understood all At this initial visit, your doctor will ask
the risks related to the use of valproate you to read and sign an Annual Risk
during pregnancy, and recommendations Acknowledgement Form to make sure
on how to avoid becoming pregnant you are aware and have understood all
while taking valproate. the risks related to the use of valproate
during pregnancy and recommendations
on how to avoid becoming pregnant
while taking valproate.
If you decide you want to start a family
26discuss this subject with your doctor be done to reduce the risks for your
as soon as possible. Do not stop baby’s health while keeping your
valproate or using contraception until epilepsy/bipolar disorder under control.
you have been able to consider this
with him/her. You need to review Ask your doctor about taking folic acid
the risks of your baby’s health while when planning to have a baby, as this
keeping your epilepsy or bipolar can lower the general risk of spina
disorder under control. You and your bifida and early miscarriage that exists
doctor should agree on what to do with all pregnancies. However, it is
with your treatment before you start unlikely that it will reduce the risk of
trying for a baby. birth defects associated with valproate
use.
I am taking valproate and not
planning a family I am taking valproate and have
already become pregnant
Always use effective contraception
if you are taking valproate and do If you think you may be pregnant
not plan to have a baby. Do not stop do not stop taking valproate as your
using the contraceptive at any time. epilepsy/bipolar disorder may become
Ask the advice of your doctor, worse.
gynaecologist/obstetrician or
midwife/professional at the family First speak to your doctor about your
planning clinic on the most effective options. He/she may switch you to
and suitable method of contraception another treatment and will explain
for you. how to make the transition. In some
circumstances, it may not always
Immediately consult your doctor if be possible to switch to another
you think you are pregnant. Never treatment. Please refer to your doctor
stop taking valproate until you have for additional information.
consulted your doctor even in a case
where you have become pregnant, During your pregnancy you will be
as it can be dangerous for you and monitored closely to make sure that
your baby. your condition is controlled and to
check how your baby is developing.
I am taking valproate and planning
a family What is Epilepsy South Africa doing
about valproate?
If you are planning a baby, first tell
your doctor but keep taking valproate Persons with epilepsy have the right
and using contraception until you to make informed decisions about
have spoken to your doctor. their healthcare, including treatment
It is important that you do not options. As such, Epilepsy South Africa
become pregnant until you and your has entered negotiations with Sanofi
doctor have spoken. He/she may with a view to improving access to
need to change your medicine a long accurate information for women and
time before you become pregnant to girls with epilepsy. It is anticipated that
make sure your condition is stable. this education initiative will be rolled
You also need to consider what can out in 2021.
27The Verster Family
By the Verster Family My eerste woorde was “wie is jy?” Hy
was geskok en teleurgesteld. Ek het nie
My man is 46 jaar out en het as kind geweet wie hy was of dat ek geboorte
epilepsy gehad. Dit het begin toe hy 3 gegee het nie. Ek het met hom gestry oor
was en gestop toe hy 16 oud was. In die ek getroud is en ‘n baba gehad het. Die
tagtiger- en negentigerjare is epilepsie dokters het oor die aanval verduidelik en
anders behandel. Hy was nie toegelaat hy het geweet hoe hy dit moes hanteer
om ‘n openbare skool te bywoon nie. Hy weens sy epilepsie. Ek het geheueverlies
is in ‘n koshuis vir kinders met spesiale gehad vir ongeveer 3 weke.
behoeftes geplaas.
My aanvalle het soggens eerste gebeur.
Sy aanvalle het op enige tyd van die dag Ek het die medikasie gestaak omdat dit
plaasgevind. Hy het bedags verskillende nie werk nie. My man, skoonouers en
tablette geneem. In normale skole word dokters het met my gestry dat ek nie
daar met jou gespot as jy epilepsie medikasie geneem het nie. Nadat ek die
gehad het, maar dit het hom nie gekeer medikasie gestaak het, het ek besluit
nie. In matriek het hy 4 onderskeidings om ‘n dieet met ‘n hoë proteïeninhoud te
behaal en was ook die beste presteerder begin om gewig te verloor. Toe ek met
in Gauteng vir daardie jaar. Hy het aan die dieet begin, het my aanvalle minder
die Craven Week Rugby deelgeneem en geword. Ek het 2 tot 3 aanvalle per
verskeie trofeë en medaljes vir atletiek maand gehad. Dit het binne vyf maande
(100 m) en rugby verower. na 1 aanval verander. Soms het ek die
dieet gevolg. Ek het gevind dat die eet
Ek en my man is getroud en ek was van proteïenryke en dan styselagtige
swanger met ons eersteling. Ek was voedsel (bv. ‘n toebroodjie) ‘n aanval
normaal op 23. Ek het ‘n kamer gedeel veroorsaak. April 2014 het ek my laaste
met ‘n baba wat gebore is met ‘n aanval gekry. As gevolg hiervan is ek al
gesplete lip. Die baba het aanhou huil. 6 jaar lank sonder aanvalle. Ek is nou 43
Ek het nooit 2 nagte geslaap nie. Op die jaar oud.
3de nag het ek ‘n rukkie geslaap, maar
vroegoggend (4 uur) wakker geword. My dogter se epilepsie het in Mei 2015
Ek was opgewonde om saam met my op die ouderdom van 14 begin. Dit het op
dogter huis toe te gaan. Ek het haar om skool voorgekom. Met my aankoms
7 uur gevoer. Toe gebeur dit. Dit was my was dit verby. Ek het geweet dit is
eerste aanval. Ek val teen die bed en my epilepsie. Sy is getoets en epilepsy is
baba val op die vloer. Die dokter het haar gediagnoseer. Die tweede keer was sy
ondersoek en sy was ok. Ek het ‘n blou tuis. Ek het verpleeg personeel in die
oog en ‘n knop op my voorkop gehad. hospitaal ontmoet. Haar epilepsie het
Nadat ek herstel het, het my man ons ook ‘n patroon gevorm. Aanvalle het
kom haal. gedurende haar maandelikse siklus of as
gevolg van spanning plaasgevind. Haar
Hy stap die kamer binne, met blomme. aanvalle kom enige tyd voor 11uur voor.
Dit was makliker om te hanteer.
28You can also read
