People with epilepsy, more often than not are faced with challenges daily. How we deal with these challenges depends on how easily and how soon we will overcome them to live an improved lifestyle. The articles in this edition express how the writers have, with strength and determination, reached their respective goals.

This edition includes the following:

Epilepsy South Africa Educational Trust Offers Opportunities – read the success stories from some of the benefi ciaries: Mbali Mkhize: Pharmacist, Kirsten Deans: Sports Management, Siyabonga Ngcobo: Accounting Teacher and future CA, and Mikhail Janowski: Future IT professional.

Leon’s “My Life with Epilepsy” touches on his experiences growing up with epilepsy in Kuruman and how he persevered to achieve his goal in becoming a plumber.

Ria Booysens and Wendy Schwikkard submitted contrasting life stories, which indicate the reaction that friends and the community can have on a person, who is diagnosed with epilepsy. Ria experienced cruelty and ostracism and spent

WINTER EDITION Volume 31 No. 2

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E P I N E W STHIS NEWSLETTER IS

PROUDLY SPONSORED BY:A NEWSLETTER FOR PEOPLE WITH EPILEPSY, BY PEOPLE WITH EPILEPSY

CONTENTS1. Editorial by Tim de Villiers: Vice Chairman, Epilepsy South Africa

2. Contrasting Stories

3. Epilepsy South Africa Educational Trust Offers Opportunities

4. My Life with Epilepsy - Leon Moorcroft

5. Stand up for Epilepsy Campaign of the International League Against Epilepsy

6. Through Childhood and Teenage Years to Successful Employment - Noluthando Monica Sivile

7. Fast Facts About Epilepsy

National Office • Share Call Number: 0860 EPILEPSY (0860 374 537) • www.epilepsy.org.za

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

to achieve his goal in becoming a plumber.

Ria Booysens and Wendy Schwikkard submitted contrasting life stories, which indicate the reaction that friends and the community can have on a person, who is diagnosed with epilepsy. Ria experienced cruelty and ostracism and spent

Ria Booysens and Wendy Schwikkard submitted contrasting life stories, which indicate the reaction that friends and the community can have on a person, who is diagnosed with epilepsy. Ria experienced cruelty and ostracism and spent

This edition includes the following:

Epilepsy South Africa Educational Trust Offers Opportunitiesread the success stories from some of the benefi ciaries: Mbali Mkhize: Pharmacist, Kirsten Deans: Sports Management, Siyabonga Ngcobo: Accounting Teacher and future CA, and Mikhail Janowski: Future IT professional.

My Life with Epilepsy”growing up with epilepsy in Kuruman and how he persevered to achieve his goal in becoming a plumber.

Ria Booysens and Wendy Schwikkard submitted contrasting life stories, which indicate the reaction that friends and the community can have on a person, who is diagnosed with epilepsy. Ria experienced cruelty and ostracism and spent

National Office •

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

This edition includes the following:

Epilepsy South Africa Educational Trust Offers Opportunitiesread the success stories from some of the benefi ciaries: Mbali Mkhize: Pharmacist, Kirsten Deans: Sports Management, Siyabonga Ngcobo: Accounting Teacher and future CA, and Mikhail Janowski: Future IT professional.

Leon’s “My Life with Epilepsy”growing up with epilepsy in Kuruman and how he persevered to achieve his goal in becoming a plumber.

Ria Booysens and Wendy Schwikkard submitted contrasting life stories, which indicate the reaction that friends and the community can have on a person, who is diagnosed with epilepsy. Ria experienced cruelty and ostracism and spent

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

By Tim de Villiers: Vice Chairman, Epilepsy South AfricaEDITORIAL

1

many years blaming herself before fi nally reaching her dreams, whilst Wendy experienced love and support and has never been held back by epilepsy.

The Epinews Team expresses their sincerest condolences to Wendy Schwikkard and her family. Wendy and her family were involved in an accident, which claimed the life of her father and resulted in serious injuries to her mother, brother and herself. We wish Wendy and her family lots of strength and a speedy recovery. On a positive note, we wish Wendy well for her wedding in August and lifetime of happiness with her husband to be.

Janine Versfeld, our Editor, is resigning from the Epinews team as she has accepted a research fellowship at the University of Dublin. Janine has also been on the Epilepsy SA Educational Trust for a few years. We wish Janine lots of good luck and look forward to hearing from her.

We thank the Epinews Team, Janine, Lesley, Wendy and Tim, who are very proud of this publication, a true advocacy product of people with epilepsy in partnership with Epilepsy South Africa. We hope you find this publication inspiring and we encourage you to share your life story, attributes, achievements, research, etc. in our future editions of this publication.

Epinews is published twice per annum; a summer edition in February and a winter edition in July.

EPILEPSY SOUTH AFRICA EDUCATIONAL TRUST OFFERS OPPORTUNITIES

CONTRASTING STORIES

This story shows how important the reaction of friends and the community is when a person is diagnosed with epilepsy. Ria experienced cruelty and ostracism and spent many years blaming herself before fi nally reaching her dreams. Wendy experienced love and support and has never been held back by epilepsy. Draw inspiration from both these brave, talented women.

RIA’S STORY

My name is Ria Grove Booysens. I have had epilepsy since the age of 15. I was born and grew up in Lichtenburg, a rural village in the North West. I am a “laatlammetjie”, born 14 years after my youngest brother.

As a child, I had a very strong personality. I had a natural instinct to always win and do well. I was a leader, loved people and always wanted to help those less fortunate. I thrived on everything involving a microphone – public speaking, performances at school etc. I was head of culture in junior school, as well as deputy head girl. I also did well at sport, making it to the SA trials for gymnastics. Then there was drum majorettes; I was so proud because I was the leader. I thoroughly enjoyed these graceful activities.

In high school, I went to boarding school. Everything was new and exciting – initiation, trials for athletics, netball etc. Lichtenburg High School was a big school and competition was fi erce.

In Grade 9, I had my fi rst seizure. I cannot remember much about it; actually it is like a blank page in a book. To quote my mother: “They were busy with exams. I saw that she was very tense, but put it down to studying. I made something special for her to eat. When I took it to her, I could see that something was wrong. It looked like she was suffocating. I was so shocked that I couldn’t even phone the doctor. Fortunately, she regained consciousness!”

When I came around, I obviously did not know where I was or what had happened. It felt like I had been hit by a train. My body was very sore. My parents took me to the doctor, and there I heard about epilepsy for the fi rst time. This was not something I wanted. I knew it would change my life. Although I didn’t yet fully understand everything, I had already decided: I do not deserve this. Why is this happening to me?

I had my second seizure at school. Nothing could have prepared me for the reaction from my friends and the other children. I really did not expect that they could be so insensitive, brutal almost. First, they stared in silence; then they began to laugh loudly. I was completely blind-sided and did not know which way to turn.

I wanted to get away, I was embarrassed, humiliated, sad, and worst of all, angry. Everything was a total mess; my life was upside down. I had been a leader and the other children looked up to me, and suddenly I was being mocked. I felt so inferior. I just could not live with it so my parents let me move to another school. This was the biggest mistake I could make. I “ran away” because I had so much built up guilt. I should have looked people in the eye, but I could not. I should have carried on with my life, but I could not. Eventually, I ran aimlessly for 21 years.

Eventually, after I was once again treated cruelly by my colleagues after I had a seizure at work, I saw the light. I was crying and feeling sorry for myself when I started thinking about my dreams. I had always wanted to work in the television industry and be a public speaker. My life changed the day I contacted a woman I call my guardian angel. She made me realise that I must not let epilepsy hold me back, that I must use my God-given talent to tell people how special each individual is.

I realised with a shock that my pain and hurt were not really what I thought they were. When I heard I had epilepsy, I believed I was being punished for something I had done wrong. I used to lie away at night and think about my life. Was I nasty to my friend, or was I unfair to take someone to the principal’s offi ce? I kept looking for and fi nding reasons that I deserved epilepsy. My life’s decisions show that I believed I wasn’t worthy.

What I did not realise is that epilepsy is a medical condition that can be controlled. My experience that morning at school was my pain, and other people’s “bad acts” projected on me. I had done nothing wrong! When I realised this, it was the most wonderful feeling. I can now live the life God intended for me, because I have moved out of the shadow of guilt.

I work as a motivational speaker because I have taken control of my life, of epilepsy and of all negatively projected pain. My message is: Because you are special!

Remember: It’s not the strongest, smartest or most attractive that survive on Planet Earth, but the one who adjusts and adapts and eventually changes.

WENDY’S STORY

My Name is Wendy Schwikkard. I was born into a family where, on both my Mom and Dad’s sides of the family, I am the only girl. So, as a young child, I had two options: I could play rough and tumble with the boys, which generally meant that I would come away with bruises and grazes, or I could read – I turned to reading! I read everything that I could

National Office • Share Call Number: 0860 EPILEPSY (0860 374 537) • www.epilepsy.org.zaNational Office • Share Call Number: 0860 EPILEPSY (0860 374 537) • www.epilepsy.org.za

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South AfricaTel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

Remember: It’s not the strongest, smartest or most attractive that survive on Planet Earth, but the one who adjusts and

read – I turned to reading! I read everything that I could

My Name is Wendy Schwikkard. I was born into a family where, on both my Mom and Dad’s sides of the family, I am the only girl. So, as a young child, I had two options: I could play rough and tumble with the boys, which generally meant that I would come away with bruises and grazes, or I could read – I turned to reading! I read everything that I could

National Office •

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

for me, because I have moved out of the shadow of guilt.for me, because I have moved out of the shadow of guilt.

I work as a motivational speaker because I have taken control of my life, of epilepsy and of all negatively projected

Remember: It’s not the strongest, smartest or most attractive that survive on Planet Earth, but the one who adjusts and

My Name is Wendy Schwikkard. I was born into a family where, on both my Mom and Dad’s sides of the family, I am the only girl. So, as a young child, I had two options: I could play rough and tumble with the boys, which generally meant that I would come away with bruises and grazes, or I could read – I turned to reading! I read everything that I could

My Name is Wendy Schwikkard. I was born into a family where, on both my Mom and Dad’s sides of the family, I am the only girl. So, as a young child, I had two options: I could play rough and tumble with the boys, which generally meant that I would come away with bruises and grazes, or I could read – I turned to reading! I read everything that I could

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

get my hands on: books; newspapers; magazines; while eating breakfast, I was the kid who read the breakfast cereal box at the table.

I have never known my life without reading. I remember the fi rst book that my parents bought for me. It was for my birthday when I was fi ve and it was The Magic Faraway Tree by Enid Blyton. My most vivid memories of school are not of the people or of the sports that I played

or the musicals I took part in, but of the books that I read. I loved reading so much that in high school I took part in the De Beers English Olympiad – which is basically an extra English Literature exam for nerds. My two highest accolades in that competition were in Grade 11 in 2000 where I was awarded a Bronze Award and in Matric where I came 80th out of 3000 participants and received a Gold Award.

Reading has led to a love of writing, which is how I came to write for the school magazine in high school, start my own blog and write for Epinews. This love of language, especially English, led me to study an undergraduate degree in English and then be accepted in a Learnership Programme at Westville

In 1997, Epilepsy South Africa established the Mick Leary Educational Trust to assist people with epilepsy to complete their tertiary education. The Trust was named after Professor Mick Leary, a former Epilepsy South Africa Chairperson, Paediatric Neurologist and epilepsy expert, who had been involved with Epilepsy South Africa for 27 years. Several companies, including some of the large pharmaceutical companies and manufacturers of anticonvulsant medications, have made funds for bursaries available. In 2009, the name of the Trust was changed to the Epilepsy South Africa Educational Trust.

AIMS OF THE TRUST

• To enable people with epilepsy to study at tertiary level.

• To empower people from marginalised and previously disadvantaged communities.

• To create role models with epilepsy, to whom others with the condition can look to for advice and inspiration.

• People with epilepsy are often denied bursaries on account of their condition. The trust aims to correct this and ensure that these people are able to graduate, and fi nd themselves employable on the open labour market.

Girls’ High School to study a Post Graduate Certifi cate in English and History. I have then gone on to study toward my degree in Psychology and I am currently doing my Honours degree in English. This love of English has allowed me the opportunity to go into the fi eld of copy writing and editing; to start up writing programmes at the tertiary institution at which I lecture English.

My fi rst seizure happened on the bus trip down to the Grahamstown School Festival in my Matric year (2001). It was quite scary, but with all the love and support of my friends and of my teachers on that trip, I enjoyed the festival. When it was time to leave to go back home, I was fully prepared for the tests that awaited me. Being told that I had epilepsy was quite a shock to my family as there is no history of epilepsy in my family. For the rest of my Matric year, my parents were very over-protective of me because they did not want anything bad to happen to me.

Having epilepsy has not hindered me in any way; if anything it has motivated me to push myself harder to prove to myself that this condition need not stop me from achieving anything. Having epilepsy has not stopped me from coaching water polo, swimming and hockey; neither has it stopped me playing hockey or swimming or playing water polo. It has not stopped me kloofi ng in the Blinderkloof in the Eastern Cape or clearing alien vegetation from the Van Staden’s Pass. I am not scared to embark on new adventures, except perhaps bungee jumping, but that is because I am afraid of heights, but that is another condition to speak about on another day!

MBALI MKHIZE – PHARMACIST

Many people with epilepsy fi nd tertiary education challenging, due to the side-effects of medication or seizures brought on by stress. The Trust is proud to have helped Mbalenhle (Mbali) Mkhize achieve her potential. This is her story:

“My fi rst memory is being discharged from the paediatric ward, where I had been diagnosed with epilepsy, at four years old. From a young

age, I enjoyed counting, saying the alphabet and singing. By the age of fi ve, my parents had separated. I really enjoyed school because I enjoyed learning. I found it diffi cult to make friends, but that didn’t matter to me; what mattered was my

32

National Office • Share Call Number: 0860 EPILEPSY (0860 374 537) • www.epilepsy.org.zaNational Office • Share Call Number: 0860 EPILEPSY (0860 374 537) • www.epilepsy.org.za

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South AfricaTel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

National Office •

Tel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South AfricaTel +27 21 595 4900 • Fax +27 21 595 4901 • PO Box 12100 • N1 City 7463 • Cape Town, South Africa

performance. I wanted to show my schoolmates that, no matter what they thought of me, I had the same learning potential as they did. I would come in the top 10 in class and always scored A’s in mathematics. In Grade 7, I got an award for the highest mark in maths. In Grade 11, I got a certifi cate from AMESA (Association of Mathematics Education of South Africa) for coming 5th in KZN.

Yes, I would have seizures; there was once where I had a seizure while writing an exam, another time I had status epilepticus and ended up in hospital for about a week. All this didn’t stop me from believing that I would fi nish my matric and be able to fulfi l my dream of becoming a health professional. I passed matric with exemption and was able to get a place in the pharmacy department of UKZN Westville.

University was tough for me in many ways. I would have seizures and be depressed, especially because of the tensions in my family and money worries. This affected my studies, but I am not someone who lets things stop me reaching my goals. I decided to research scholarships, and came across the Mick Leary Trust, to whom I’m still faithful. I was also able to get a bursary for people with disabilities from the Department of Labour.

There were those times where I would get sick and end up in hospital, fail courses, but I would tell myself, “No! Never give up. Believe in yourself.” And, yes, I achieved my goal. I was able to fi nish my 4-year degree in 6 years. I did my internship in 1 year and wrote an exam, which I passed. I then did another year of community service. After that, I was fi nally able to get the licence of a qualifi ed pharmacist. For 3 years, I have been practising as a pharmacist in a hospital.”

KIRSTEN DEANS: SPORTING HERO

On her sixth birthday in 1991, Kirsten Deans was “a normal, happy little girl, full of beans,” living with her grandparents on their smallholding outside Port Elizabeth. On the day that started as a happy birthday, Kirsten’s family was ambushed and Kirsten was shot in the head. The paramedics who rushed the little girl to hospital revived her four times on the journey. Even once stabilised, doctors predicted that Kirsten would never walk

or talk again. The bullet that shattered Kirsten’s skull left her completely paralysed for two years. The severe head trauma also left her with acquired epilepsy.

Kirsten started school in a wheelchair, attending mainstream schools until she transferred to Cape Recife, where she matriculated in 2003. Kirsten’s leadership traits, perseverance and willingness to work hard were already apparent at school:

“During my school career, I was very involved in the SRC as well as in sport for people with physical disabilities. I started with athletics, but found my talents lay more in swimming. I was chosen to represent EP in swimming from 1998-2003; during this time I set, and still hold, numerous SA and EP records in my given classifi cation. In 2001, I was selected to represent SA at the Cerebral Palsy International Sports & Recreation (CPISRA) World Championships in Nottingham, England, where I won 2 gold medals, beating several paralympians.

My whole family is very sporty and sport plays a big role in our family life. Being a disabled person involved in sport has shown me that people with disabilities can do anything we put our minds to. Sport has taught me about dedication, perseverance, hard work and passion. It has had an incredible impact in my life. Sport is what gave me the strength to overcome the obstacles. I would like to show people with epilepsy or other disabilities that they have no limits unless they convince themselves of that. Success is all in the mind, and if you have the drive to succeed, you won’t let any form of disability stop you from achieving your goal.”

Not surprisingly, Kirsten has chosen to study Sport Management at tertiary level and will graduate in April 2012. As she says, “Sport has a very special place in my heart, it’s more than just a career choice, it’s been a coping mechanism, a constructive way to deal with everything. Where some people turn to recreational drug and alcohol use, I turned to sport.”

SIYABONGA NGCOBO – ACCOUNTING TEACHER AND FUTURE CA

Siyabonga Ngcobo received fi nancial assistance from the Epilepsy South Africa Educational Trust for four years while studying accounting science. In his letter thanking the Trust, he mentions Ruth Gabier (National Offi ce Secretary) and Amelia Jones (Chairperson of the Trust) by name, and says, “I’m proud of the Educational Trust, they make things possible, they restore hope where there is no hope.” Like

many of us, Siyabonga has heard common misconceptions around epilepsy. He has a message of courage and hope that dispels notions of a limited life:

“My whole life changed completely when I was fi rst diagnosed with epilepsy. I thought that was the end of me in this world. I was in Grade 3, and heard rumours that a person who has this condition does not live long. I told myself that a man’s life is controlled by no one, but only by God. Today, with the support of family, community and friends, I am still alive!

I would like to use this opportunity to encourage everyone out there that life goes on, even if you have epilepsy. If you feel like you can’t go any further, I want you to know that you will make it, you will live, you will study and you will be whatever you want to be - it all depends on you.

I believe that, with the right attitude, everything is possible. Look at me. Today, I have completed my degree and am working as a teacher. I am also studying to become a chartered accountant. It is my dream to be a CA – we do not have enough CAs in South Africa. I am living proof that epilepsy does not have to be a disturbance in your life.

I have special thanks to the following people who have been supportive along the way: my father, Sister Mzolo at the clinic, Ruth Gabier, Amelia Jones, my sister – I can’t mention you all. God bless you.”

MIKHAIL JANOWSKI – IT PROFESSIONAL OF THE FUTURE

I had my fi rst seizure at age 7. It was just a moment of dizziness in which I fell over and knocked my

head. My doctor prescribed some homeopathic medicine which I took for a few weeks, and everything went back to normal. Then, around my 13th birthday, I started having localised seizures in my left arm. At fi rst, they were just a kind

of numb feeling, but they started to get stronger and more regular, until one night while I was sick with the fl u I had my fi rst full blown seizure. The results of an EEG and CAT scan were completely normal, which is often the case in people with epilepsy.

I started taking medication and my family, especially my mom, was very supportive and, most importantly, did not make a big deal out of it. I hardly ever talked about my epilepsy with anyone except my mom and the only tangible effect it has on my life is having to take medication every day.

Over the years, I had a few seizures but fortunately for me, when they happened during the day they only affected my arm; only when I am asleep do they sometimes affect my whole body. I found that fast, unexpected events or movements trigger my seizures. I can tell when they are about to happen and if I concentrate and relax at the same time I can often prevent them.

I am currently studying Information Systems at UCT. This is a fi eld that I’ve always been interested in and it is really cool to be able to create computer systems and programs. Now that everything is becoming more computerised and internet-orientated, there is really a need for IT professionals and I think I have a very exciting career ahead of me.

MY LIFE WITH EPILEPSY

My name is Leon Moorcroft and I live in Kuruman in the Northwest Province. I am 44 years of age and was diagnosed with epilepsy at the age of 4. My condition developed due to a head injury as a baby. This happened while my mother was at work; nobody told her of my injury that day and it really affected her. I have taken medication for over 38 years, but still have seizures every 4th to 5th week.

During my schooling, I experienced a few problems and found it humiliating when I had seizures in the classroom or at school. My classmates were too afraid to assist me, as they did not know what to do. However, I managed to complete my schooling – all my subjects were fi ne but I battled with mathematics.

After completing my schooling, I got a job at the local hotel, where I worked for a number of years. Being a relatively small town, most people got to know me and know about my epilepsy condition. The hotel owner was caring towards me and was happy with my work performance. When I had seizures at work, he would even drive me home so that I could rest and recover.

However, one day I decided that I needed further education, so I studied to become a plumber, receiving my plumbing certifi cate, when I was 31 years of age. However, I have not managed any large contracts due to my condition and stress,

but I do smaller jobs for family, friends and even my old school teachers in my community. Some of the people I work for tell me that my workmanship is of a very good standard and better than those who do not have epilepsy.

I am also not ashamed to tell people of my condition, as I believe that I can lead a fairly normal life as most others do, apart from the seizures. I inform people about epilepsy and what they need to do to assist.

Leon Moorcroft

54

STAND UP FOR EPILEPSY CAMPAIGN OF THE INTERNATIONAL LEAGUE AGAINST EPILEPSY

Given the objective to expand our international profile, the organisation submitted an entry into the Stand Up For Epilepsy Campaign of the International League Against Epilepsy (ILAE). The aim is to create a collection of photographs of famous sportspersons meeting people with epilepsy. The photographs will convey the message that people with epilepsy, like athletes themselves, can be inspired to achieve their goals and lead full and active lives. This initiative will result in an exhibition at the London 2012 European Congress on Epileptology (30 September - 4 October), which will be held shortly after the London Olympics. The images will also be made available to National Chapters for advocacy initiative in their own countries. Through contacts at Cipla we secured a photo shoot with Ryk Neethling with Gary Gabier (the son of our National Office Administrator, Ruth Gabier). Gary is employed at the CareCraft Lansdowne workshop of the Western Cape Branch.

Gary Gabier’s response to his experience: “It was a wonderful day. I felt nervous, anxious and very excited to do the photo-shoot, but from the experience learnt to become more confident about my life. It was a great opportunity to speak to Ryk for the first time, it surprised

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National Office •

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me in a way I did not expect. We were able to discuss sport and I saw where he lives. I had Ryk’s book called Chasing the Dream with me and he signed it and wrote “Dream big and remember you can change anything.”

THROUGH CHILDHOOD AND TEENAGE YEARS TO SUCCESSFUL EMPLOYMENT

My epilepsy started in childhood. When I was young, doctors promised I would “grow out of it”,

but that never happened. My childhood wasn’t pleasant, or should I rather say, not as normal as others’. I didn’t enjoy my days at school; I was constantly taking medication, in hospital or staying at home. I had no friends, as others believed that epilepsy was contagious; I felt lonely and rejected. My mother tended to be overprotective so I wasn’t allowed to be or do what I wanted to; she was cautious as to where I went and what my activities consisted of.

I eventually matured, went to high school and then realised that staying at home and feeling sorry for myself wasn’t going to help me. I decided to learn more about epilepsy, its causes, treatment, and where to get assistance. This was the start gaining more self-confi dence to enable me to fi nd more friends and broaden my horizons in my community.

A friend introduced me to Love Life, South Africa’s HIV-prevention programme for young people. Since its inception by leading private funders and the South African government in 1999, Love Life has harnessed youth leadership to promote healthy lifestyles among South African teenagers.

By Noluthando Monica Sivile

We would meet and communicate about everything, but still I couldn’t open up about my condition, until one day I had a seizure in a meeting. Everyone was scared because they didn’t really understand what was happening. Paramedics were called, but then afterwards I had to explain to others what epilepsy was. This was extremely diffi cult, but made me feel a lot more content. Then discrimination started, with some individuals gossiping behind my back; I felt I had no choice but to leave the group and stay at home once again. After all this, schooling became diffi cult and I failed my Matric examinations. I didn’t want to rewrite or do anything else but stay at home, and always felt sorry for myself.

I made a friend who also has epilepsy; we tried to find assistance on the internet and eventually found Epilepsy South Africa. Through Epilepsy South Africa, we managed to make more friendships and groups and shared more knowledge. I gained confidence, self-esteem, more information and eventually got answers to most of the questions disturbing me. I then decided to start a support group. I obtained the correct medication, my epilepsy improved and I had a desire to return to school, study more and finally look for employment.

I learned to accept my Epilepsy and I now have a feeling of contentment, knowing I am happy within myself. I found employment, am studying at the same time and taking my medication regularly which is now helping to control my seizures.

A lesson was learned for me not to stay at home, feel lonely and rejected, but to seek assistance, friendship, guidance and support through a group or by other means, sharing with others that they can also have a normal life even though they have Epilepsy!

FAST FACTS ABOUT EPILEPSY

• Epilepsy is the most common neurological condition.

• About 1 in every 200 people have epilepsy.

• A single seizure does not necessarily mean you have epilepsy.

• Epilepsy can affect anyone, at any age.

• 75% of people with epilepsy had their fi rst seizure before the age of 20.

• Up to 80% of people will have their epilepsy controlled by medication.

• Many children with epilepsy will outgrow it.

• Epilepsy is not a mental illness or psychiatric disorder.

• Epilepsy is not infectious or contagious.

• 1 in 20 people have a seizure at some time in their lives.

• A seizure is caused by abnormal chemical activity of the brain.

• Slightly more males than females have epilepsy.

• Epilepsy has not stood in the way of achievement for people like Jonty Rhodes, Vusi Mahlasela and Agatha Christie.

• There are different forms of epilepsy and types of seizures.

• Some people’s seizures follow a defi nite pattern while others have unpredictable seizures.

• Some people get a warning or “aura” before a seizure.

• Most seizures are over quickly and are easily dealt with.

• Epilepsy affects people of all levels of intelligence and from all racial and social backgrounds.

• Anyone can develop epilepsy at any stage of their life.

DEAR MEMBERS

The Epinews Editorial Board thank you for your support,

and trust that you enjoyed reading this edition.

If any of you wish to contribute articles, life stories, interesting facts, etc. for our

future editions, please submit them to Epilepsy South Africa National Offi ce

e-mail: marketing.no@epilepsy.org.za.

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