Archive for July, 2010|Monthly archive page

July 2010

In Uncategorized on July 12, 2010 at 9:19 am
July newsletter as it contains vibrant information about National Epilepsy Day and Week which is celebrated during June.

Our newsletter shows how busy and creative the Epilepsy South Africa team was to share information about epilepsy with their countrymen. Activities ranged from quiz competitions, soccer games, candle lighting ceremonies, talks, exhibitions and presentations. The list of activities is too long to mention here, but you can read more below. Epilepsy South Africa and our supporters are dedicated to eradicate myths associated with epilepsy, as well as the stigma and discrimination experienced by people with epilepsy.

You will definitely enjoy the inspirational stories from Pieter Walser and Johan Schade which shows how much an individual can do. To be further inspired, look out for our Winter 2010 edition of Epinews which contains more stories in this vein.

We are excited about the IBE (International Bureau for Epilepsy) photography competition recently launched. I personally encourage everyone with epilepsy in South Africa to participate in this competition.

Despite National Epilepsy Day and Week being a thing of the past for 2010, I hope that you will continue to assist us in spreading information about epilepsy, decreasing myths and eradicating stigma and discrimination. This is our goal and together we can turn obstacles into true potential!


Noëline de Goede

The National Office celebrates National Epilepsy Week

The National Office celebrates National Epilepsy Week  By Karen Robinson, National Social Development Manager

National Epilepsy Week is the annual awareness raising campaign of Epilepsy South Africa. The aim of this week is to draw the attention of the South African public to epilepsy as a condition. The theme for National Epilepsy Week was “Sharing Epilepsy”. During this special week the National Office educated the general public about epilepsy and the human rights of people with epilepsy. This assisted in decreasing the myths and social stigma associated with epilepsy.

The National Office reached approximately 280,000 people with messages through the following activities:

Day 1: 35,000 information brochures were handed out to vehicles traveling on four National Toll Roads and in the operational areas of Branches. The brochure contained information about epilepsy to educate and raise awareness. These were handed out at the following Toll Plazas:

  • Carousel Plaza on the N1 (120 km north of Johannesburg);
  • Mooi Plaza on the N3 (428 km south of Johannesburg);
  • Kroonvaal Plaza on the N1; and
  • Middelburg Plaza on the N4 (165 east of Johannesburg).

The National Office also commemorated Epilepsy Day (21 June) with a candle lighting ceremonyThe international symbol for epilepsy is the flame and by lighting a candle on this day we hope to continue as an organisation to bring epilepsy out of the shadows of ignorance into the light of knowledge and understanding.
The following project partners in other provinces also assisted in distributing information:

  • REHAB – East London (Amathole District)
  • Utho Ngathi – East London/Umtata
  • University of the Free State
  • National Department of Defence
  • Yonder – Northern Cape
  • Bonitas
  • Alexander Forbes
  • Spice 4 Life website
  • Front Shop Magazine (Medical Chronicle)
  • De Nosa Nurses Magazine
  • Proudly South African Campaign
  • Matthew’s Friends
  • Eastern Cape Department of Social Development
  • Eastern Cape Office on the Status of Disabled People (OSDP)
  • South African Medical Association
  • Novartis (including a television interview and placement of an article in the Citizen newspaper)

Day 2, 3, 4 and 5: We sent short educational messages to public subscribers via SMS, but also through our Facebook, Blog, Twitter and Electronic Newsletter.

On 23 June the National Social Development Manager facilitated Epilepsy Awareness Training at the National Department of Agriculture in Cape Town. Training was very successful and participants asked many questions related to myths surrounding epilepsy. A lot of time was also spent on practical first aid for seizures. The National Social Development Manager facilitated a group discussion on the impact of a diagnosis of epilepsy on the individual. Participants also discussed employment- related discrimination towards people with epilepsy at length.

James Mkalipi (recently appointed to the Epilepsy South Africa Eastern Cape office) facilitated Epilepsy Awareness Training at the Department of Social Development, Mhlonto Municipality in Qumbu (Umtata) and also Mpheko and Kilili villages near Umtata. Our project partner (REHAB) also facilitated epilepsy training at the Eastern Cape OSDP.

The National Marketer and Public Relations Officer conducted radio interviews on RSG, Trans World Radio, Radio 2000 and Radio Namaqualand. James Mkalipi was interviewed on YCRFM (a student radio station at the Walter Sisulu University in Umtata).

We thank all our project partners and Epilepsy South Africa personnel for their commitment and loyalty to ensure the successful implementation of our awareness campaign. This changed myths and misconceptions about epilepsy for many South Africans. Remember, any person can develop epilepsy at any stage of their lives.

Inspiring others by my epilepsy!

Inspiring others by my epilepsy!  

By Drikie Snyman, National Marketer and Public Relations Officer

Pieter Walser is not a new friend of Epilepsy South Africa. He always assists the organisation and helped again when we needed people to share their experiences with epilepsy on radio.

During Epilepsy Week (21 – 27 June 2010) we enjoyed radio exposure and arranged interviews. He volunteered for an interview on “Radio Sonder Grense” on National Epilepsy Day (21 June) and touched the Afrikaans speaking audience with his passion.

Pieter shared his challenges and successes since being diagnosed with epilepsy. Surprisingly, Pieter claims that these challenges motivate him to stay “human and grounded”. He said that everone is “a bit strange” if we really think about it and found that sharing his disability made it easy for others to open up to him. He freely shared about things that he found tough, but noted that he refused to give up. This helps him to smile at his personal achievements in the wine industry.

As a winemaker Pieter donated some of his wine to our Epilepsy South Africa Wine Auction in 2009 and also hosted a tasting table. The Parlotones in partnership with Woolworths chose Pieter to make two wines labeled in honour of this South African band with an international following. He has two beautiful kids and a loving wife. Pieter likes the outdoors and is a passionate surfer, although only for fun.

Picture taken and shared with permission of Thys Lombaard.

To view a video clip of Pieter click here.

Epilepsy Week Report from Mpumalanga/North West Province

Epilepsy Week Report from Mpumalanga/North West Province  Epilepsy Week started on the 9th of June in Dullstroom. Vuvuzelas and information about epilepsy were handed out at a road block facilitated by Dullstroom Police (SAPS). The staff was in high spirits to “Share epilepsy!” with local and international visitors.

Our Annual Epilepsy Week Parade was moved to the 16th of June to coincide with Youth Day which is celebrated nationally. The fundraising and community development team also arranged a soccer derby to take place on this eventful day. This presented an opportunity to integrate the communities and to provide a fun filled public holiday for our residents.

Helping Hands ensured that we had treats for all the guests at the event. Seven Streams Water supplied the bottled water and King Pie gave us pies to share with eager participants! It was a wonderful privilege to present eats to everyone that gathered on the community sports field that day.

Soccer teams that competed were Epilepsy Residents versus Epilepsy Staff, Dullstroom FC versus Taxi Drivers and Dullstroom SAPS versus Dullstroom Municipality. The soccer match between the staff and residents brought a lot of laughs and all the residents really enjoyed it! The Dullstroom Municipality team walked away triumphantly as they played against the Taxi drivers in the final match, with a final score of 6 – 0!

A sports day was held on 20 June at Elandsdoorn where 11 of our residents joined over 25 other residential care and special needs institutions in volley ball and soccer. They had a great time and also learnt to be thankful for what they have in comparison to other people’s disabilities.

National Epilepsy Day (21 June) was celebrated in our recreation hall with all the residents lighting a candle and thinking of people with epilepsy. We also celebrated our Annual Achiever Award which was enjoyed by all. Everyone was treated to cake and tea afterwards thanks to Beryl (our Centre Manager).

Contact Riette or Elsa at the fundraising and marketing office on 013 254 0161

Epilepsy Week Report from the Western Cape

Epilepsy Week Report from the Western Cape  By the Social Development Team Western Cape

Epilepsy South Africa Western Cape celebrated Epilepsy Week with various awareness campaigns throughout the month of June. The underlying theme was, “Epilepsy Uncovered…Discovering Potential” and the objective was to educate the public about epilepsy whilst acknowledging the potential and strengths of people with epilepsy.

The awareness campaigns targeted people at libraries, corporates, welfare organisations and malls in the districts where the social workers work. These included Wynberg, Athlone, Cape Town, Mitchell’s Plain and some rural areas. Activities included epilepsy training, disability sensitisation, puppet shows, epilepsy education and candle lighting ceremonies and were held at community health centers and libraries. Radio interviews were also done on Bush Radio, Voice of the Cape, Radio Tygerberg and Radio Zibonele.

The social work department hosted an open day at the Regional Office on 22 June 2010 to inform the public about services provided by Epilepsy South Africa Western Cape. 150 people attended the event, including children’s homes, hospital staff, welfare organizations and the Khayelitsha, Wynberg and Athlone offices of the Departments of Social Development. Jenny Jacobs shared her experience as a person living with epilepsy. A role play on seizure management illustrated what to do when someone has a seizure. A quiz followed and winners received prizes for correct answers. The children could enjoy face painting, disability sensitisation games and a doughnut eating competition. In keeping with the excitement of the Soccer World Cup, we closed the day with a competition to find the best “diski dancer”.

As Epilepsy Week draws to a close, the task of creating awareness and spreading knowledge and facts about epilepsy does not cease.

Epilepsy without words competition

Epilepsy without words competition  

 IBE launches a special photography competition as part of its Golden Jubilee celebrations.

A photography competition, open to all, is the first of many initiatives being planned to celebrate IBE’s Golden Jubilee in 2011. The competition, titled Epilepsy Without Words is open for entries from 15th May 2010 until the closing date on 1st March 2011.

A special photo gallery, displaying all entries received, will be open on the IBE website from 1st June 2011 and the competition winners will be announced during the 29th International Epilepsy Congress in Rome in late August 2011.


In addition to a category for regular digital camera photos, there is also a special category for photos taken using a mobile/cell phone. As most of us now carry a phone with an inbuilt camera, there is no excuse for not taking part in this competition. And, who knows, you could be the winner of one of the major prizes! 

Who can enter?

The competition is open to everyone – professional and amateur photographers alike. However, if you are under the age of 16 years, you will need the permission of a parent/guardian to take part.


Digital Camera Category:

  • 1st Prize: US$3,000
  • 2nd Prize: US$2,000
  • 3rd Prize: US$1,000

Mobile/Cell Phone Category:

  • 1st Prize: US$500
  • 2nd Prize: US$300
  • 3rd Prize: US$200


Epilepsy week – Canzibe Mission station

Epilepsy week – Canzibe Mission station 

By Johan Schade

When thinking of the Transkei one normally thinks of a poor area situated somewhere in the Eastern Cape – an area which was once part of the homelands system of the previous Apartheid Regime. You visualize the amount of brutal fights which were fought mostly for two things; land and/or cattle. The thought of the Wild Coast comes to mind and how many ships and crews went down because of the rough coastline and human negligence in extreme conditions.

In April 2009 I was part of a group who hiked the Wild Coast trail from Port St. Johns to Coffy Bay. I learnt that the coastal terrain is rough, people are poor and live in mud rondavels, there was no fighting and the Xhosa people are friendly and open hearted. It came to my attention that the Sonheuwels Dutch Reformed Church in Port Elizabeth planned to conduct an outreach to the Canzibe Mission Station close to Mthatha. Realising that this could form part of Epilepsy Week and assist in sharing knowledge about epilepsy in the area I jumped on board.

We set off for Canzibe Mission Station on 20 June with our travel costs sponsored by the Sonheuwels Church and food sponsored by Shoprite Checkers. During our stay we met with students from Stellenbosch and Robertson and learned that there was an ongoing programme started in 1961 whereby Canzibe and thirteen other mission stations in the area are used to put development and community projects in place, maintain these mission stations and bring the word of God to the people. The Canzibe mission station is looked after by Ds. Wicus and Carina van der Walt. See http://www.canzibe.co.za.

The poplar Canzibe Hospital is situated near the Mission Station. Unfortunately, it was not possible to share information with a group of individuals who had epilepsy since the language barrier posed a major obstacle. However, it paved the way for a workshop to be conducted in the near future. The logistics for such a workshop proved to be complex requiring more planning. It is evident that HIV and AIDS are rampant in the area and in my dealings with the local community it was clear that epilepsy is still seen as someone being possessed by a spirit or demon and not a disability. It was also mentioned that a person who suffers from HIV/AIDS and epilepsy have more difficulty in controlling seizures.

In five days our group of nine repaired a window, visited the hospital, built a wooden bookshelf, repaired a 30-meter fence, unblocked three drains and repaired a tow bar after it was damaged by the poor condition of the road. Personally, the most rewarding part of the trip was the used for group study. It was always an opinion from a group member about a particular biblical part which could turn a discussion in a direction not anticipated. When the concept was applied to one’s own life it became all too relevant and allowed you to suddenly see your own shortcomings.

Sometimes the psychological aspects of people with epilepsy are ignored. However, it is this kind of intervention which makes it possible to identify weaknesses, resolve them and suddenly find a new purpose in life. Never in my entire life have I felt as humble as after this experience. I can assure you that when we start to give to others it is the most rewarding thing on this planet – to share with someone from the bounty we receive every day cannot buy us a place in heaven but it may just brighten your day.

Today it seems to me that living with epilepsy is a privilege. One gets wiser and stronger by experiencing the needs of others, allowing you to appreciate your own position.

I thank God for this opportunity, Carina and Wicus for their hospitality, the Sonheuwels Dutch Reformed Church and Shoprite Checkers for making it possible. Last, but not least I thank Annelie van Rooyen , our youth leader who coordinated this venture.

News from Gauteng – Where it all happens!

News from Gauteng - Where it all happens!

There was so much activity going on in Gauteng during National Epilepsy Week that our small team was stretched to the limit – but we managed. It was exciting, exhilarating and rewarding.

The emphasis of the various campaigns was on accelerating awareness about epilepsy and the services of Epilepsy South Africa in all sectors of the South African population.

Our achievements:

  • We reached a total of 1,260 people through presentations.
  • We held community awareness programmes at Tsakane Mall, Oakmore Taxi Rank, Tembisa Taxi Rank, Daveyton Taxi rank and surrounding areas, Kwa- Thema Taxi Rank, Chiawelo Clinic in Soweto, Tsakane Clinic, Orange Farm Clinic and Sebokeng, Zone 12 Municipal Clinic, reaching 1,660 people.
  • We held exhibitions with lit candles (supplied by us) at libraries in Kwa-Thema, Tsakane, Kempton Park, Glenanda, Nigel, Heidelberg (seven branches), Germiston, Tembisa, Ivory Park, Benoni, Bakerton, Rabie Ridge, Ivory Park North and Westonaria (4 branches). It is unfortunately not possible to calculate how many people were reached at these venues.
  • The candle lighting ceremonies held at our Geduld and Daggafontein Centres were attended by the Departments of Health and Social Development and Correctional Services, Springs SAPS, suppliers, funders, sponsors, suppliers of work to the protective workshops, families, day workers and residents. Letters of appreciation were handed out to guests who support the centre. A total of 370 people attended these two events.

Media Coverage was enjoyed through community radio stations (Radio Pretoria, Radio Impact, East Rand Stereo and Radio Islam) reaching approximately 134,000 listeners with the accurate message about epilepsy. Newspaper articles were sent to the Caxton Group, the Krugersdorp News and The Citizen.

We are proud to have reached a total of 140,420 people through our awareness programme. This number does not include those venues where it was not possible to count the number of people reached.

There is still a lot of work to be done due to the lack of knowledge about epilepsy as demonstrated by the questions and myths detailed below:


  • Can a person with epilepsy be cured?
  • If a person studies too much, can they get epilepsy?
  • Can epilepsy affect studying?
  • When a child with epilepsy is alone at home, what must he/she do to bath safely?
  • Why shouldn’t you put something in a person’s mouth to prevent them from biting their tongue?
  • Can a person get epilepsy by being bewitched?
  • Are nappies available for adults who are incontinent during a seizure?
  • Is there a rubber identification bracelet available for people with epilepsy?
  • If a person faints, do they have epilepsy?
  • Is stress, anxiety and depression related to epilepsy?
  • Can constant headaches cause epilepsy?
  • Does epilepsy cause memory loss and forgetfulness?


  • A large number of people refused to take the sweet attached to the information card, as they believed that they would get epilepsy from it. They equated it with a belief that HIV/AIDS was spread through infected oranges.
  • Another myth was that if a person with epilepsy broke wind, they could infect those around them.
  • The task team must be congratulated on a successful campaign. Their efforts are appreciated, especially since they had limited resources to work with. We also thank other staff who assisted with preparations. We have once again proved that the old saying “Together we stand – divided we fall” is true. Well done Gauteng!

In Uncategorized on July 1, 2010 at 9:41 am
The business days of National Epilepsy Week 2010 are at its end. The two days left will be like the rest of your time available to share information about epilepsy, at your own initiative. You will have to share information when the opportunity arises. Join in the effort to do this in your sphere of influence.

We close the week’s messages by honoring those around people with epilepsy. Family and friends of people that lives with the condition plays a major role in how the person accepts and conquers the challenges.  They also need support and understanding.  If you share the truth about the condition it will help all of us.

Share epilepsy!

Family and support

The way family or friends react to your diagnosis could be just what you need, or you may find some of their reactions both hurtful and unsupportive. People around you could feel shocked, frightened, worried, angry and helpless, but still not understand the situation. They may also not have the knowledge and may need time to adjust to work their feelings out.

Remember what you need from them may change over time. Family and friends can best support you if you are able to tell them clearly what you find useful.