Archive for June, 2011|Monthly archive page

Flash mob draws attention to National Epilepsy Week

In Uncategorized on June 24, 2011 at 4:31 pm

At exactly 13h15, 21 June 2011, commuters at the Cape Town central station were caught unawares by a flash mob. A large group of participants who were informed of the flash mob in advance, gathered at the Cape Town station’s main gangway and at exactly 13h15 fell to the floor to act out what a tonic clonic seizure looks like.


“Onlookers gasped at the sudden motion of people next to them falling to the floor.” says Noëline de Goede National Director for Epilepsy South Africa, “once they realised what was going on we brought out the posters and revealed our t-shirts to spread the message.”

The flash mob was organised  to raise awareness for Epilepsy during National Epilepsy Week (20-26 June 2011). Posters that read “Don’t look away, we face it every day”, “Epilepsy is a condition, not a disease” and “Know the facts” helped raise awareness for Epilepsy in South Africa.

If you would like to show your support, please visit the Epilepsy South Africa website http://www.epilepsysa.org.za to make a donation. Epilepsy South Africa is dependant upon the goodwill of its supporters. Your donation will support Epilepsy South Africa in helping those who live with Epilepsy.


Epilepsy SA is a non-profit organisation, which aims to include all people with disabilities, epilepsy, and people affected by epilepsy, in building the nation’s social capital by providing equal opportunities in realising their potential. Epilepsy is a very common neurological condition that affects one in every 100 people. It is characterised by recurrent seizures that occur because of an electrical discharge in the brain. A seizure can be triggered by something as simple as a flickering television’s flashing lights. Epilepsy is not a mental illness or psychiatric disorder, it’s not contagious either. It can affect anyone at any age. Many brave people live with epilepsy on a daily basis – and many have proven that the condition can be controlled! Jonty Rhodes, one of South Africa’s greatest cricketers, has lived with epilepsy since childhood. He has shown many sceptics how epilepsy can be controlled to a point of being overcome.

EPILEPSY SA – Newsletter – June 2011

In Uncategorized on June 15, 2011 at 9:50 am


Dear Readers

We can definitely feel the cold of winter starting and for Epilepsy South Africa this means that we are gearing up for National Epilepsy Week (20 – 26 June 2011) and National Epilepsy Day (21 June 2011). In this month’s newsletter, you will read on activities being planned for the celebration of National Epilepsy Week in and around the country. We hope that you will join the activities of Epilepsy South Africa and that we can raise significant awareness about epilepsy and the services available from Epilepsy South Africa.

You will read that Epilepsy South Africa is one of the leaders in development, this time in women’s entrepreneurial development. These initiatives are led by Marina Clark, the Deputy National Director of Epilepsy South Africa. The Western Cape Branch also led the launch of Child Protection Month on behalf of the Western Cape Provincial Office of the Department of Social Development on 4 June 2011 in Malmesbury. This much anticipated event proved to be very successful.

We have included some interesting information about energy drinks, tips to caregivers and information about Redilev (the generic version of Keppra) that has not been readily available. We also ask that you support the work of Epilepsy South Africa by purchasing your Kruger Rand Raffle ticket or SMS-ing the word “true” to “38000”. Your financial support will assist us to continue service delivery to people with epilepsy. I wish all our readers a positive National Epilepsy Week and National Epilepsy Day in June 2011.

Hope to hear from you during this period.

Noëline de Goede

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DEVELOPING WOMEN ENTREPRENEURS IN THE EASTERN CAPE The Eastern Cape Development Corporation (ECDC) approached the National Office for assistance in building their capacity in terms of the development of women entrepreneurs. As a result, the National Office facilitated a Women’s Entrepreneurship Development (WED) programme for the ECDC in East London from 23 to 27 May 2011. The programme was attended by nine employees of the ECDC based in areas as far-reaching as Mthatha, Queenstown, East London, Port Elizabeth and even Aliwal North. The ECDC will be rolling out new programmes targeting women entrepreneurs, including women with disabilities in the Eastern Cape. We look forward to partnering with the ECDC in the future to develop entrepreneurs and create viable and sustainable economic empowerment opportunities in the Eastern Cape.

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Women (especially women with disabilities) are one of the most marginalised groups in the business world. To address this problem, the WEDGE (Women’s Entrepreneurship Development and Gender Equality) Project of the International Labour Organisation (ILO) recently announced a partnership with the National Office of Epilepsy South Africa.

The programme aims to build advocacy skills amongst women entrepreneurship associations with a view to increasing their representation in the development of national SME legislation.

The programme will be rolled out nationally through a series of one-day workshops in each of the nine provinces of South Africa.

The National Office is currently developing the Build My Advocacy Skills training programme to provide practical information on the strategies and steps inherent in advocacy. This will enable women’s entrepreneurial associations to plan, conduct, monitor and evaluate their own advocacy campaigns. For more information about this initiative, contact Marina Clarke at the National Office on (021) 595-4900 or economicdev.no@epilepsy.org.za.

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On 18 May 2011, South Africans once again exercised their rights to a free, democratic society by gathering at voting stations across the country to have their say.

This type of public voting must be one of the strongest reflections of democracy for it includes all people: the rich and the poor, the young and the… well, not-so-young. People of all races, religions and educational backgrounds unite – perhaps not in voice, but definitely in action.

From June 2011, Epilepsy South Africa brings you another opportunity to vote for what is right! The difference, however, is that South Africans will be united in Voice and in Action! With a fantastic sponsorship by Clickatell (Pty) Ltd, we have secured our own SMS donation line where people can exercise their right to help others, support the rights of the vulnerable people in SA and take action against stigma and discrimination. To make your mark in the lives of people with epilepsy and other disabilities in South Africa, SMS the word “true” to 38000 and donate R10 towards the services of Epilepsy SA. Your SMS can help turn obstacles into true potential. You have the choice. Make your mark and turn SMS (short message service) into “See More Smiles”!

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ONLY A FEW DAYS LEFT TO WIN YOUR VERY OWN KRUGER RAND!  (FOR ONLY R20!!) For those of you who have not yet entered the Kruger Rand raffle – you have one last chance to become the proud new owner of a Kruger Rand, or any of the other fantastic prizes. Click on this link www.givengain.com/cgi-bin/giga.cgi?cmd=cause_dir_project&project_id=9960&cause_id=2619 to purchase your raffle ticket (or plenty if you’re feeling lucky!) for a R20 donation. Not only will you be doing good, you will also stand a chance to win any one of three fantastic prizes:

1st Prize: A 1oz Kruger Rand (valued at more than R9,500.00!)

2nd Prize: A Campmaster trailer (for the overload on the long road!)

3rd Prize: A set of his & hers Fossil Watches (Yes, both!)

Always read the fine print: The Kruger Rand Raffle is facilitated by the Epilepsy South Africa National Office, contact no. 021 595 4900, and is open to anyone except National Office personnel.

Epilepsy South Africa acknowledges that all funds raised by this initiative will accrue directly to Epilepsy South Africa to sustain its services to people with epilepsy and other disabilities in South Africa.

The draw for the raffle will be held on 21 June 2011 at the National Office of Epilepsy South Africa in Parow, Cape Town. The draw will be done by independent auditors with the assistance of the National Director of Epilepsy South Africa. The results of the draw will be the only and final result and no further correspondence will be entered into. For any direct enquiries regarding the raffle, please contact the National Office Fundraiser on (021) 595-4900.

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Users of the anti-epilepsy medication, Redilev (the generic version of Keppra), have been experiencing difficulties in obtaining 250mg and 500mg for the past few months. A representative from our Gauteng Branch made contact with Dr Reddy’s Laboratories (Pty) Ltd (the manufacturers of Redilev) on 24 May 2011 after receiving a number of enquiries from members of the public regarding the shortage. A spokesperson for the company admitted that there had been a problem, but gave assurance that the problem has now been rectified and that consumers should not encounter this problem in the future.

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Residents of the Daggafontein residential care centre in Gauteng were treated to a belated Easter party on Thursday, 26 May 2011. The party was organised and hosted by the Springs Rotary Anns. Our sincere thanks go to the ladies of the Rotary Anns for their continued support.

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Juanita de Canha (Centre Manager) and Annadien Scholtz (Social Worker) of our Geduld residential care centre will be interviewed about epilepsy and the services offered by the Gauteng Branch on Radio Pretoria on Tuesday, 6 June 2011. Social Worker, Manini Maruwa, will talk about epilepsy on the Voice of Tembisa radio station on Wednesday, 8 June 2011.

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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. National Epilepsy Day is celebrated annually on 21 June. Epilepsy South Africa celebrates this day and week with all South Africans affected by epilepsy. Remember that at least 1% of the South African population has epilepsy. The theme for National Epilepsy Week 2011 is “Turning obstacles into true potential”. The aim of this campaign is to educate the general public about the human rights of people with epilepsy. This will assist in dispelling the myths and social stigma associated with the condition.

You can contact 0860 374537 (0860EPILEPSY) for more information about epilepsy or Epilepsy South Africa. Contact your nearest Epilepsy South Africa Branch to find out how you can get involved during National Epilepsy Week to help raise awareness about epilepsy.

Email: socdev.no@epilepsy.org.za

Website: www.epilepsy.org.za During National Epilepsy Week the Gauteng Branch will be displaying epilepsy information at libraries throughout the Ekurhuleni Metropolitan area. The Department of Health (on behalf of the MEC) have communicated with the Gauteng branch expressing their desire to be involved in Epilepsy Week 2011. A formal invitation has been extended to the MEC and its colleagues.

The annual candle lighting ceremony will be held at the Geduld residential care centre on Tuesday, 21 June. 70 guests and family members are expected to attend. An invitation has been received from Dischem Pharmacy, Glenanda to host an epilepsy themed exhibition on 21 June 2011. They also invited manufacturers of anti-epilepsy medication to join them on the day. The Assistant Director (Kandas Kandawire) will be hosting this exhibition.

Final negotiations are under way to organise nineteen additional radio interviews and seven presentations planned for Epilepsy Week during the month of June 2011. The Chiawelo Epilepsy Support Group have also organised (as their own initiative) an epilepsy themed exhibition at the Maponya Shopping Mall in Soweto on 22 June 2011. They will be joined by members of the Zola epilepsy support group, and assisted by the social workers of the Gauteng Branch.

The National Department of Social Development has extended an invitation to the Gauteng Branch to participate in a ‘Wellness Day’ to be held on Friday, 24 June 2011. The month of June 2011 has been dedicated to raising awareness and understanding about Epilepsy through all sectors of the Western Cape. These exciting activities include road shows at police stations, fire stations, Pollsmoor prison and libraries. Information pamphlets will be handed out at traffic intersections, while epilepsy training will be conducted in schools and at corporate companies, as well as Non-Governmental Organisations. The Western Cape social development team is pulling out all stops to ensure that epilepsy awareness is foremost on everybody’s lips during the month of June. If you are interested in assisting us with the distribution of epilepsy information in your community or volunteering your services during June 2011, please contact Anthea Emmanuel on (021) 704-3612.

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Epilepsy South Africa spearheaded the launch of Child Protection Month on 4 June 2011 in Malmesbury. The Western Cape Branch managed the event for the Provincial Office of the Department of Social Development and all the preparation proved to be very successful.

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Epilepsy Facts Corner



10 Tips for Family Caregivers

Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.

Watch out for signs of depression and don’t delay in getting professional help when you need it.

When people offer help, accept the offer and suggest specific things that they can do.

Educate yourself about your loved one’s condition and how to communicate effectively with doctors.

There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.

Trust your instincts. Most of the time they’ll lead you in the right direction. Caregivers often do a lot of lifting, pushing and pulling. Be good to your back.

Grieve for your losses. Then, allow yourself to dream new dreams.

Seek support from other caregivers. There is great strength in knowing that you are not alone.

Stand up for your rights as a caregiver and a citizen.

Source: The National Caregivers Association



Energy drinks may pose a risk for serious adverse health effects in some children, especially those with diabetes, seizures, cardiac abnormalities or mood and behavior disorders. A new study, Health Effects on Energy Drinks on Children, Adolescents, and Young Adults, in the March 2011 issue of Pediatrics, the journal of the American Academy of Pediatrics (published online, 14 February 2011), determined that energy drinks have no therapeutic benefit to children. Also, both the known and unknown properties of the ingredients, combined with reports of toxicity, may put some children at risk for adverse health events.

Youth account for half of the energy drink market, and according to surveys, 30 to 50% of adolescents report consuming energy drinks. Typically, energy drinks contain high levels of stimulants such as caffeine, taurine, and quarana, and safe consumption levels have not yet been established for most adolescents.

Energy drinks are frequently marketed to athletes and at-risk young adults, therefore it is important for pediatric health care providers to screen for heavy consumption (with and without alcohol), and to educate families and children at-risk for energy drink overdose. Such an event can result in seizures, stroke and even sudden death.

Source: The American Academy Pediatrics