Epilepsy SA Newsletter – September 2011

FROM THE DESK OF THE NATIONAL DIRECTOR It seems strange to be writing to you from an empty desk.  The previous National Director, Noëline de Goede left Epilepsy South Africa on 10 September 2011 after a decade with the organisation.  Her staff will remember Noëline fondly as a leader of distinction with the ability to clearly see the road into the future – a strong woman who will be missed. As Acting National Director I will be standing in until the appointment of the new Director and welcome you to the September 2011 newsletter which is again packed with news and information. Several articles in this issue focus on employment for people with epilepsy and other disabilities.  We are proud to report on the first Action My Business Growth workshop which offers sustainability solutions for protective workshops and income generation projects.  August and September saw the finalisation of the advocacy programme for women entrepreneur association and small business associations.  The BankSeta offers learnership opportunities in the banking and microfinance sector, while the SA Disability Development Trust launched a national learnership programme in partnership with the W&RSETA.  Peopleplus has joined the Department of Labour to create new opportunities for job seekers with disabilities.  We are also please to introduce a new feature presenting career opportunities for people with epilepsy and other disabilities.  Contact us if you would like to advertise vacancies or development opportunities for people with disabilities. For those readers lucky enough to be travelling abroad next year we provide information about the 28th Annual Pacific Rim International Conference on Disability and Diversity in Hawaii. The winners of the Jubilee Photo Competition are announced after more than 300 photographs were submitted to the IBE.  However, this is not the end of life through a lens.  The Western Cape Branch has integrated art into the disability sensitisation programme by engaging 15 learners with disabilities in a photographic project with the Frank Joubert School of Art.  In addition, the Branch reports about the AGM and new developments. We thank all the Rock Idols who joined us in celebrating Casual Day.  If you missed out on this opportunity, bookmark the first Friday in September 2012 to ensure that you are part of Casual Day 2012. Sherri shares her experiences about her daughter Emilee diagnosed with epilepsy at a very young age.  She moves us from tears to joy telling this story, while Rilandi’s story draws the picture of the rosebud with lissencephaly. The Epilepsy Facts Corner has become a regular feature offering information and insight about epilepsy and in this issue we focus on a link identified between schizophrenia and epilepsy. Like the brightness of spring dawning all over our country, we look forward to new beginnings and developments.  Join us in celebrating life in this season of re-birth. Regards Marina Clarke Acting National Director Back to top

Growing protective workshops and income generation projects In recent newsletters we reported about the implementation of the Action My Business Growth (AMG) Programme within Epilepsy South Africa.  However, this programme was developed specifically for women entrepreneurs and thus did not address our entire target market.  With approval from the International Labour Organisation (ILO) we adapted this programme to suit the needs of protective/sheltered workshops for people with disabilities, as well as income generation projects. Protective and sheltered workshops have for many years received bad press as “dumping grounds” that do not economically develop and empower people with disabilities.  The new disability version of the AMG Programme aims to provide the necessary skills and strategies to ensure the financial sustainability and growth of these workshops to enhance job security and development opportunities for people with epilepsy and other disabilities. Similarly, income generation projects (often referred to as self-help groups) have done little to provide economic and financial independence for people with disabilities.  Reference is often made to the fact that people with disabilities earn very little (if anything) as members of these projects, leading to disillusionment and frustration.  The adapted AMG programme offers the opportunity for members of such projects to identify the growth potential of their businesses as a pathway to economic viability and sustainability leading to increased earning potential for the members. While much of the original material was retained, disability-specific information was added and the approach adapted to suit the identified needs.  For example, a case study was developed based on an income generation project.  It became clear during the adaptation process that facilitators would need to be familiar with the disability sector and especially the needs of people with disabilities. The National Office of Epilepsy South Africa piloted the disability version of the AMG Programme through a workshop held on 5 September 2011 in Cape Town.  This workshop formed part of the organisation’s Economic Development Conference on 5 and 6 September 2011. For more information contact Marina Clarke on (021) 595-4900 or via email (economicdev.no@epilepsy.org.za) Back to top

Advocacy skills training for small business associations and women entrepreneur associations Readers of this newsletter have been following the progress of the advocacy skills programme we are implementing on behalf of the International Labour Organisation (ILO) Women Entrepreneurs Development and Gender Equality (WEDGE) Programme. In total we have facilitated nine workshops – one in each province.  In our previous newsletter we reported on the first four workshops (Gauteng, the Northern Cape, Mpumalanga and the Free State).  During August 2011 we facilitated the remaining workshops. The Western Cape workshop was held in Cape Town on 11 August 2011 and drew interest groups from both urban areas around the Mother City and rural areas (as far afield as Ceres and Tulbagh).  The workshop was attended by 25 delegates representing a wide array of organisations, including the South African Women Entrepreneur Network (SAWEN), Women in Construction, Women on Farms, Women in Business Empowerment Network (WIBEN) and several co-operatives.  This workshop had immediate impact with several of the co-operatives attending joined WIBEN and immediately arranged events in the months to come, including training and advocacy campaigns. The Eastern Cape workshop was originally planned for Port Elizabeth, but relocated to East London at the request of delegates.  As such, the workshop was held in East London on 30 August 2011 through the active support of the Eastern Cape Development Corporation (ECDC).  Not only did the ECDC make training facilities available to us, but also supported the programme financially.  The workshop was attended by 14 delegates and included representatives of the SEDA Construction Incubator, the Vukuzenzele Disabled Association (based in Lady Frere), the Department of Labour and co-operatives. The KZN workshop was held on 2 September 2011 in Durban in partnership with Trade and Investment KZN.   13 delegates attended the workshop, including representatives from disability organisations, cooperatives, the financial sector and government departments from as far afield as Kokstad. The North West workshop was held in South Africa’s platinum capital, Rustenburg on 13 September 2011.  This was one of the largest workshops with more than 30 delegates (mostly women) attending.  The need for giving women a voice led to the development of an advocacy campaign to identify the needs of women. While the last workshop was held in Polokwane in the Limpopo Province on 16 September 2011 this is certainly not the end of the road as the project will be taken across our borders to Lesotho, Mozambique and Malawi. Back to top

28th Annual Pacific Rim International Conference on Disability & Diversity “Living to Our Complete Potential” March 26 & 27, 2012 Hawaii Convention Center 1801 Kalakaua Avenue Honolulu, HI 96815-1513 The 28th Annual Pacific Rim International Conference on Disability and Diversity (formerly called the Pacific Rim International Conference on Disabilities) 2012 Living to our Complete Potential March 26th & 27th at the Hawaii Convention Center in Honolulu. PacRim is a top rated international educational conference for and from persons with disabilities, family members, researchers, service providers, policymakers, community leaders, advocates, and internationally recognized professionals.. Become a part of a historic change! Please contact: prinfo@hawaii.edu (808)956-7539 http://www.pacrim.hawaii.edu Back to top

Jubilee Photo Competition: Announcing the Winners Dear Friends More than 300 artistic photographs were submitted to the IBE Golden Jubilee Photography Competition, giving a very difficult task to members of the judging panel, who spent a considerable amount of time in choosing the winners. One of the main criteria for the award was to express epilepsy through a photographic image. The following photographs were the worthy winners: CAMERA PHOTOS: First Prize: US$3,000 Thilde Mørup Christensen Denmark Title: Pieces Second Prize: US$2,000 Anders Nilsson Sweden Title: Seizure Joint Third Prize: US$500 James Leahy Ireland Title: Fear of it all Joint Third Prize: US$500 Kai Löffelbein Germany Title: Look MOBILE PHONE CATEGORY: First Prize: US$500 Lotta Hoffback-Kaljo Sweden Title: Light in the Tunnel Second Prize: US$300 Sherwyn Vargas Philippines Title: My world and me Third Prize: US$200 Patricia Simpson-Green USA Title: 1st known Grand Mal at 60 miles per hour The judging panel extends its thanks to all those who took part in the competition. All photographs submitted to the competition are now available to view on a special gallery on the website at http://www.ibe-epilepsy.org/taskforces/jubilee-photo-competition. Postcards of the winning four photographs in the camera category were available, free of charge, on the IBE stand in the Exhibition Hall during the 29th International Epilepsy Congress, Rome – 28th August – 1st September 2011. Judging panel: Denise Chapman, Shunglon Lai, Susanne Lund, Peter Murphy, Simon Shorvon, Tatsuya Tanaka and Sam Wiebe. Back to top

Assistance required sourcing Candidates with Disabilities Good day, I am currently seeking persons with disabilities to participate in a one year learnership in the banking and microfinance sector. A monthly allowance will be paid to the successful applicants. Important criteria for the applicants is a completed 3 year tertiary qualification OR valid matric certificate. Must be credit and criminal clear. Immediately available with no pending work or tertiary obligations. Interested candidates can visit our website, http://www.kelly.co.za and download an application. Or contact me directly for a form to be faxed or e-mailed to them. Please contact me should you require any further information. Your assistance will be greatly appreciated. Kind Regards Gail Pieterse Project Manager:  BankSeta Tel : +27 11 269 8863 Cel : 082 561 7266 Fax : 088 1700 158 gail.pieterse@kelly.co.za http://www.kelly.co.za Back to top

Launch of SADDT National Learnerships Programme The SADDT’s National Learnerships Programme with the W&RSETA has been launched!  The historical event took place at the Indaba Hotel, Fourways, on 23 May 2011.  This truly festive occasion was attended by the Minister of Women, Children and People with Disabilities, Lulu Xingwana, as well as the Deputy Ministers of Higher Education and Training, Professor Hlengiwe Mkize, and of Public Works, Henrietta Bogopane-Zulu, respectively.  Senior executives of four major retail chains, SADDT and SETA chairpersons and staff and a variety of other guests were present.  The programme featured many speakers and several memorable highlights. In welcoming the guests, the SADDT CEO, Thulani Tshabalala, set the scene by placing the Learnerships Programme within the context of the “Year of Job Creation” announced by President Zuma in his recent State of the Nation Address.  Even though South Africa has advanced from a medical model of disability to the more progressive social model, the statistics on disability paint a bleak picture, as pointed out by Thulani, with 30% of disabled people having no education at all and with just 3% having a post-matric qualification.  The National Learnerships Programme represented a significant response to this situation and the immense need was vividly illustrated by the fact that in just two weeks since the first advertisement of the programme, the Trust had received 200 firm applications plus 600 requests for application forms. In his address, the CEO of the W&RSETA, Joel Dikgole traced the path taken in the growing relationship between his SETA and the SADDT which started in 2008 with a bold first step:  A hundred Pre-Learnerships were offered to persons with disabilities in Gauteng.  This was followed in 2009 and 2010 by 100 full L2 Learnerships in which disabled learners had achieved an exceptionally high graduation rate.  Along the way the example set by the W&RSETA has been emulated by several other training authorities.  And now the time has come to roll out the programme on a national scale, offering no less than 404 learnerships in five provinces. Learner testimonies followed and provided some of the most memorable moments of the launch. Nokuthula Mngomezulu completed a L2 Learnership with the W&RSETA and is employed as a receptionist.  She praised the Lord for the opportunity she had been given and felt at ease with her disability.  “I am what I am.  Good things come.  You must never give up!” she said.  Dennilton Datoba said he was proud of his achievements and loved his job as a storeman.  Too often the community regarded disabled people as failures, but he had had a chance to prove them wrong.  His advice to others?  “When you are given an opportunity, grab it with both hands!” A report on the study visit to the UK and Spain was officially handed over to Minister Xingwana by Dr Hennie Zwarts of the W&RSETA who had been a member of the study delegation.  The purpose had been to gather information on employment equity and job creation for persons with disabilities in the countries visited.  In her response, Minister Xingwana said that progress was being made on many fronts, but that barriers and discriminatory attitudes persisted.  Government’s failure to advance towards the 2% target for the employment equity of disabled people was cause for concern, the current level in the public sector being just 0.6%.  The Department of Women, Children and People with Disabilities was, however, strengthening its monitoring capacity to hold all departments and sectors of government accountable for this target. Turning to the study report, the Minister mentioned each of the recommendations in turn:  Provision of a comprehensive and integrated package of government employment services;  Establishment of a government-supported agency responsible for the co-ordination and delivery of employment services;  Creation of a sustainable revenue base;  Government support for an Employers Forum on Disability;  Promotion of research and development; and  Benchmarking of services. Minister Xingwana said she accepted these recommendations which would be integrated into an overall government strategy on employment services.  The SADDT would be consulted in the matter and asked to partner with Government in the implementation of the recommendations. The Deputy Ministers of Higher Education and Training and of Public Works in turn delivered congratulatory messages, after which senior executives of several retail chains spoke of the positive effect of disability learnerships on their businesses.  In conclusion, David Smollan of the Smollan Group captured the spirit of the occasion with some inspiring words.  He said that in the current environment it was extremely difficult to create a single job and that it was even more difficult to create a job for a disabled person.  For this reason he was proud and grateful to be a participant in this new venture and he pledged his company to an increased intake of disabled learners.  “In the agricultural industry,” he finally said, “there is a saying that if fruit struggles it will develop character and you will taste it in the fruit.  We believe our disabled learners display the same character due to the struggle they have had in their lives.” Back to top

Western Cape Branch News AGM – 25 August 2011 Epilepsy South Africa Western Cape Branch celebrated its AGM on Thursday 25 August 2011. The meeting was well attended by our members, representatives of various non profit organisations and other businesses. Before the meeting our new furniture range was displayed. Much interest was shown by all the attendees. The meeting began with the first guest speaker, Rustim Ariefdien a disability consultant, who unpacked the business case and highlighted the challenges that NGO’s face, but also the ways in which businesses can utilise our services in a mutually beneficial relationship. Ruth Nugent, our senior social worker then spoke about disability sensitisation and how to create a “disability conscious organisation” The information was well received by all. Our Director, Wendy Nefdt, excitedly announced that the organisation recruited three new board members and two advisors to the Board. We certainly look forward to working with them as they share their skills and time in order to add strategic direction and value to our programmes. As the theme for this year indicates, “moving with change”, the organisation continues to move from strength to strength even when faced with adversity. Ms. Sharon Follentine from Department of Social Development head office did the thanks and closure and in her speech she also highlighted that Epilepsy South Africa has shown great strength through the team work that happens in this organisation. At this point, much to the Directors surprise, the Social Work Manager, Anthea, took the opportunity, on behalf of the staff, to acknowledge and thank Wendy for all her hard work and her commitment to the organisation over the past 11 years.  Wendy was extremely moved by this gesture and thanked everyone in return. A Photographic Expressions Project “My life through a lens” Epilepsy South Africa has begun the process of using art as part of our disability sensitization and integration programme. At this point in time we are engaging 15 learners with disabilities and those without in a photographic project with Frank Joubert School of Art.  The aim of the project is to capture a day in a young person life which tells of their challenges, interests, frustrations, joys and aspirations. The difference with this project is that learners selected will be learners with disabilities and learners without. Together the learners will capture their individual lives and have an opportunity to examine their similarities and differences through a lens of camera. The photographic project had its first workshop on the 27th August 2011. Ten children participated and in the workshop, learners learnt how to use a camera, how to take photos and then were given a disposable camera to take photographs depicting their life. Most importantly the learners interacted meaningfully with each other and helped each other understand the process of using the camera, the theory behind taking photographs, and unpacking the theme of the project. The cameras will be collected on the 5th September and the photos will be developed. In the second workshop which will be held on the 10th September 2011 the learners will be guided by the art teacher from Frank Joubert on creating a photographic essay/story with their photographs. Watch this space to see how the next workshop unfolds! Back to top

Casual Day Congratulations to all the Rock Idols of 2 September Once again, South Africans showed solidarity with persons with disabilities through their remarkable support for Casual Day 2011.  Schools, companies and individuals across the country revealed their Rock Star Alter Ego’s at this year’s Casual Day 2011 to participate in the largest fundraising project for persons with disabilities in Southern Africa. The FUN-factor in this nationwide campaign, themed “Worn to be Wild” was evident as we saw people dress up as different rock-personalities such as Lady Gaga, Ray Charles, Avril Lavigne and Ozzy Osbourne. With a decidedly Rock-Idols feel, the winners of Casual Day 2011 are:  People with disabilities!  To all those who supported Epilepsy South Africa and people with epilepsy and other disabilities through Casual Day, we say a very big THANK YOU! Wouldn’t it be fantastic if this initiative could run continuously throughout the year?  However, looking at the amount of work that the Casual Day team puts in, a year is barely enough time to launch the next Casual Day!! The reality is that the need of the vulnerable people in our country is daily rather than annually – their obstacles to overcome unremitting…  How do we provide services on a constant basis when Casual Day comes only once a year? At last! The solution to sustainable service delivery After long deliberation, hard work and downright struggling, the National Office has at long last found the answer (the very obvious one, I must say!) to real, sustainable service delivery! Yes, we have been able to activate our very own debit order donation system that we can process in-house!  With this type of monthly support, we will be able to sustain our services and, who knows (if it really goes well) even expand! It is that easy, but we need your help; even if it is with your debit order of R20 or R50.  Remember that every little bit makes that little bit of extra difference that you are making in the life of a vulnerable person.  Please contact us at 021 595 4900 or fundraising.no@epilepsy.org.za to receive your debit order form and become part of our culture of change; the culture of changing obstacles into true potential.  Who will be the first one to fill out their form..? Back to top

My inspiration to start Living with Heart. My name is Sherri and I am a mommy to three little girls, Kayla, Lorelai and Emilee. My youngest little girl, Emilee, was born premature and had to be in the neonatal intensive care unit (NICU) for a week.  However, she finally came home and was just adorable. Her sisters loved her the minute they laid eyes on her. I didn’t have a difficult pregnancy, it was just a busy one, as the older two still needed a lot of my attention. On the 14th of February 2010 I started feeling some contractions. I chatted on Skype with my best friend Lynette and on my cell phone with my other best friend Tash, and we timed my contractions. They were getting closer together so I phoned the hospital. I was told to go for a warm bath and see if that eased the contractions.  It didn’t. As my contractions were now three minutes apart, Lynette and Robin came to look after my other two kids while my husband and I headed off to the hospital. I was put on the foetal monitor and it was confirmed that I was in labour. Since I had Caesarean Sections with my other two, it was decided that we should try to stop labour. My gynaecologist worked very hard to make sure Emilee stayed in for as long as possible without trauma, and I was given steroid injections to mature her lungs.  But on Friday the 19th of February they decided it was best for Emilee not to wait any longer and she was born weighing 2.5kgs. She had some respiratory distress and went Into NICU. After being home for about 10 days little Emilee got flu, so she went to the paediatrician and was put on antibiotics. Overnight, however, she got worse and it turned out that she had pneumonia.  We had to go back to hospital. It was heartbreaking seeing her In the paediatric ward with feeding tubes and hooked up to machines.  She also had to have physiotherapy twice a day.  During one of these sessions we noticed that her leg jerked strangely, but we were not too concerned.  Ten days later we were discharged and went back home. Not long after this I noticed that Emilee was very lethargic and her jerks were coming more frequent.  I phoned our paediatrician who met us at the hospital once again.  This time she was diagnosed with viral meningitis.  After several tests and long days, she was tested for epilepsy. We were discharged again and during her check-up we were told that the results had returned and it was confirmed that Emilee had epilepsy.  My heart sank!  My older brother had epilepsy and I knew his struggles and I just didn’t know how we were going to cope.  All I wanted to do was to fix it!  How can such a perfectly pink beautiful baby, my baby Emilee, have this?  I felt lost and my world crumbled as there was nothing I could do to make her better. She was put on medication and we were told to keep an eye on her.  She was first put on Phenobarbital and did well, but she still jerked a lot.  Topamax was added to her treatment, but while on it she stopped eating.  It was a struggle just to get her to drink 50mls of milk.  She lost weight and her growth was stunted.  She was weaned off Topamax and put onto Epilim and Phenobarbital.  Finally there was a glimmer of hope!  She was drinking, growing and doing well under the circumstances, until December 2010.  She started having seizures again.  Her eyes would roll back and the jerks were just unbearable.  We were once again admitted for tests and her medication was adjusted.  Some days went well and others not.  It was a roller-coaster of emotions, sleepless nights and constant crying. In June 2011 her medication was changed once again. She is still on Epilim but Keppra has been added to her treatment.  While I hold my breath and “touch wood” so far things have been much better.  In July 2011 we have had only one seizure that I have seen which is remarkable compared to what it used to be.  I have my baby back!  She laughs, smiles, babbles and loves giving hugs and kisses.  It’s been a miraculous month. I would also like to take this opportunity to thank my family, my friends and Dr Naidoo and Dr Takoordeen and all the mommies on http://www.mommy.co.za for their support. I decided to start living with heart because every day I live with a child with epilepsy.  My heart breaks but my heart also smiles.  I have learnt to appreciate small things.  A simple “mama” with a big smile just makes my day.  I would love for parents who live each day with a child suffering from dread disease, illness, syndrome or other problems to connect with other parents going through similar trying times.  It’s important for all parents to know you’re not alone and our loved ones are in our hearts during the good times and the bad. With Heart Sherri- Lee Baker Back to top

People Find job creation initiative Peopleplus (a division of Talenger Holdings (Pty) Limited) has entered into a partnership with the Department of Labour in Gauteng for the launch of a job creation initiative – PeopleFind.  The pilot project was launched in the Ekurhuleni Metropolitan Municipality on 12 July 2011.  The pilot phase will cover the Alberton and Germiston Department of Labour offices and be rolled out to other areas within the Metro and nationally in a phased approach. The purpose of the initiative is to connect job seekers with potential employers by means of technology.  Job seekers can approach the Department of Labour offices (Alberton and Germiston) and have their details captured for them by trained employees of the Department and/or access the portal from any PC connected to the Internet on a self-help basis to upload their CV details on a central database. Business can upload unlimited vacancies and undertake as many searches of the database as required in search of staff.  All vacancies loaded are immediately available for viewing by individuals accessing the database. The site has full security protecting the identity of both individuals posting their CVs and businesses posting vacancies.  Access to details is protected by random codes generated by the system. To load your CV, place a vacancy or search the database pool go to http://www.peopleplus.co.za and click on PeopleFind. The job creation initiative is a FREE SERVICE to both unemployed people and businesses and was put together with the assistance of the Department of Labour, Mustek, Cell C, Talenger Holdings, Peopleplus and SECOB.  Businesses wishing to be part of the this initiative can contact Rodney de Villiers on (011) 615-2463 or email him at Rodney@talenger.com Back to top

My rose bud with lissencephaly My beautiful red rose was born on 23 January 2007 by an emergency C-section. Two weeks early because of complications with the umbilical cord. Weighing only 2.626 kg’s the first thing that went through my mind when holding her was “How am I ever going to get her big?” Her tiny face was identical to her older sister. Whilst bonding with Rilandi the paediatrician mentioned that she was amazed that Rilandi’s hand palms had only a few minor lines. Rilandi’s Agpar count was 8/10 and later 9/10. The next morning the paediatrician did the routine check on Rilandi and mentioned that I should take good care with her since ‘red heads’ tend to get bugs and illnesses very easily. I immediately asked God to cancel the negative words spoken on my new born. Rilandi wasso perfect as she was lying in the crib. As if she then already knew what a cute little girl she’s going to be. She took to breast feeding without any hassle! At the age of four month’s Rilandi was admitted with the Rota-virus. I could not leave my tiny rose alone at hospital and slept next to her bed for a week. At last we went home, just to come back very unexpectedly the next day for the RS virus. Another 8 days admitted and two hourly nebulised for the first three days, again we went home for a short stay. We came back to hospital the next day with Bronchiolitis! Rilandi was really suffering this time round. She had to be tube fed. It broke my heart to see my little rose so sick and helpless.Back home again after a terrifying 10days we were so relieved to be home. A few days later myself and Klarien, now 17yrs noticed Rilandi made strange eye movements, as if she wanted to sneeze. At first I thought something was irritating her nose. I recorded the scene on my cell phone, just in case. Rilandi got middle ear infection a few weeks later. We took her to the paediatrician, due to our concern for the extremely high fever. I also showed the video clip to the paediatrician and he was a bit concerned and said he’ll arrange for an EEG whilst she’s in hospital for the ‘grommet’ operation. He mentioned that it does not seem to be a normal reaction. I was devastated by his words. But I prayed to God to not let anything be wrong with our little girl. The EEG doctor did not make any eye contact with me during the EEG and afterwards I tried to get more info from him, but he did not want to discuss his findings with me. He only mentioned that the EEG showed that there is definitely abnormal brain activity. Rilandi was booked for an MMR. I thought by now, I’m going to have a breakdown, this can’t be true!The brain scan confirmed West Syndrome and she started off getting Hypsarrythmia with Infantile Spasms; we had no idea what this was. The paediatricians were waiting for us to return from the MMR procedure. When we entered her room she had the Encyclopaedias’ and a few medical books open in front of her on the desk. She welcomed us with a hug and said she is so sorry to bring us the bad news but this day is the funeral of our baby daughter. She said “I’m taking away your daughter from you today; she will never marry, have children, go to a school or be like other kids. She will always be a baby” I was shuttered by her words. I cried like never before. My heart broke into pieces. She also mentioned that there are ‘homes’ for kids like this and we might consider putting Rilandi in a home where she will be happy! Still I had no idea what all these medical terms meant. To me it was words without any meaning, hard words explained in the harshest words any one can imagine! The next day we had an appointment with the Paediatric Neurologist. I had no tears left. The doctor explained that Rilandi has an extremely rare brain condition named “Lissencephaly”. She comforted us by saying Rilandi’s brain stem is normal, the corpus colossus and  Rilandi had ‘curves’ on her brain unlike most of these cases who had a total smooth brain. Rilandi was on cortisone injections for the next ten days. I went home for the first time since Rilandi was admitted. I was exhausted. I had no feelings left. When I looked at Rilandi I could not imagine all the things the doctor said about her. I started praying day and night against all the negative words spoken about my little rose. I pleaded to God to cancel all negative thoughts and words spoken against her. Klarien came to me and asked me to promise that we will not treat Rilandi any different from another child. She asked me that we treat her little sister as a normal child with special needs. We were both committed in giving the best to our little rose. We immediately started with baby massaging. This is still done every night after her bath. She enjoys it, and tickling is obviously part of this game. God has sent her a wonderful new daddy who does not have any kids of his own and loves Rilandi as if she were his own blood. God is great!Rilandi was send to hospital again to make sure that the food ends up where it’s supposed to and not in the lungs… which might be the reason for her bad chest and not gaining very much weight. Her daddy was at her side while the tube was inserted through her tiny nose into her stomach. What a relief when the tube was removed the next day. Myself and Kobus were at her side trying to comfort her and giving love to make the eina’s go. Her new daddy and also her hero took her to choose a frame for her glasses. Just like any other little girl she chose a Barbie frame. The manufacturing company sponsored Rilandi’s frame which was a great relief, since her medical costs were getting the best of my salary. We have appointed a full time nanny for Rilandi who exercises and plays with Rilandi all day long. They are a great team and understand each other. The seizures stopped for more than two years after she was treated with cortisone and the Sabril medication. Doctors were very negative on any progress. We were advised not to ‘waste’ money on treatments and therapy’s we should just accept the fact. We accepted but also decided not to just let go. Rilandi now has good neck control and is rolling over. Rilandi has special custom made standing frame and splints to correct and encourage her standing and ankles. She now attempts to crawl. Rilandi has her own lovely personality and will definitely show you when she is not happy with a wet nappy or when she’s thirsty she will lick her lips or click with her tongue. She understands when we ask her something and talks to us in her own ‘special’ language.She now starts to put sweets in her mouth after daddy taught her how to suck her thumb, and drinks from a cup, with help. Rilandi has progressed, and all the glory to God! Rilandi is doing physiotherapy and hydrotherapy weekly and horse riding also bi-weekly.Unfortunately the seizures came back in December 2010.  Rilandi’s daily highlight is when her daddy takes her in his arms after her bath at night, she ignores everything and everyone around her, she will look at daddy and laughs when he coughs, if he doesn’t make eye contact she will look at him and start ‘talking’ to him. Klarien must sing to her every day and her favourite song is: ‘Don’t let anyone tell you that you’re not strong enough, don’t give up, there’s nothing wrong with just being yourself, that’s more than enough”. When we go to bed at night Rilandi has her own private time with God. I’ll sing her, her ‘Liewe Jesus-songs” while doing movements with her hands. You should also not attempt to sing these songs during the day, you will soon realise that she’s not willing to go to bed, that is bed time songs only! I would like to encourage parents in my position to ensure they know the reason for a cerebral palsy prognosis. We should not just accept when your child has been diagnosed with a brain condition. Find out the reason behind the prognosis. Work with your child, love him/her unconditionally. Communicate a lot, repeat, repeat, repeat everything you do or say to your child might take 100 times longer for your child to understand. But he/she will eventually, in their own special way they know what is going on around them. God chose us, I did not want to be chosen for this big task, but God wanted to choose me. I did not want to be a special mom… but God wanted me to be one. Why are we chosen for this? Because God only trusts certain special people with special children. Everything about an ‘any-cephally’ child is special. But the facial features all seem to be like that of an angel. I would love to start a support group for any-cephally children in SA. It seems like the only support groups for this condition are overseas. She is currently treated by Prof Rodda at Baragwannath. Back to top

Epilepsy Facts Corner Research: Schizophrenia and epilepsy have ‘strong link’ – BBC NEWS HEALTH (19 September 2011) People with schizophrenia are six times more likely to develop epilepsy, says a study which finds a strong relationship between the two diseases.  Writing in Epilepsia, researchers in Taiwan say this could be due to genetic, neurobiological or environmental factors. The study followed around 16,000 patients with epilepsy and schizophrenia between 1999 and 2008. An epilepsy expert says it is an interesting and convincing study.  The study used data from the Taiwan National Health Insurance database and was led by researchers from the China Medical University Hospital in Taichung.  They identified 5,195 patients with schizophrenia and 11,527 patients with epilepsy who were diagnosed during the nine years period. These groups of patients were compared to groups of the same sex and age who did not have either epilepsy or schizophrenia.  The findings show that the incidence of epilepsy was 6.99 per 1,000 person-years in the schizophrenia patient group compared to 1.19 in the non-schizophrenia group. The incidence of schizophrenia was 3.53 per 1,000 person-years for patients with epilepsy compared to 0.46 in the non-epilepsy group. Previous studies had suggested a prevalence of psychosis among epilepsy patients. Two-way relationship Researchers in this study also found that schizophrenia levels were slightly higher in men with epilepsy than in women with the disease. Dr I-Ching Chou, associate professor with the China Medical University in Taichung inTaiwan, said: “Our research results show a strong bidirectional relation between schizophrenia and epilepsy.  “This relationship may be due to common pathogenesis in these diseases such as genetic susceptibility and environmental factors, but further investigation of the pathological mechanisms are needed.” Dr Manny Bagary, consultant neuropsychiatrist in Birmingham, said it was a “very interesting” study. “We have been aware that epilepsy sufferers seem to be have an increased risk of psychosis but this is the first convincing study to suggest that people with schizophrenia could also be at risk of developing epilepsy, suggesting a bidirectional relationship has been found between depression and epilepsy”. “The association may be due to a common environmental factors such as traumatic brain injury or brain haemorrhage in utero. Alternatively, a genetic association may be relevant such as LGI1 or CNTNAP2 genes which have been associated with seizures and psychosis.”  “However, there may be some questions to ask about the reliability of the schizophrenia and epilepsy diagnoses in the study because it is a retrospective health register study and both conditions can be difficult to diagnose. “Nevertheless, this study will serve to guide further research into the relationship between epilepsy and psychosis.”

Career Opportunities 1. Payroll Manager – Gauteng Key Performance Areas: • Compilation, administration and maintenance of VIP Payroll System. • Administration and controlling of monthly payments to statutory institutions (SARS, UIF, etc.) and other related 3rd parties. • Ensure that personal expense claims/reimbursements, loans and advances are in line with the Company Policy. • Assist Finance Department with timeous Head Count reporting requirements. • Continuous communication and consulting with employees and 3rd parties in order to ensure accurate payroll information is obtained. Skills Required • Minimum qualifications Grade 12 – Matric • Relevant HR qualification (competed) would be an advantage. • Five years business experience in a HR environment essential. • Advanced MS Office skills – essential. • Softline VIP Premier – essential 2. Human Resources Trainee – Gauteng Key Performance Areas: • Recruiting and staffing logistics • Employee orientation, development, training logistics and recordkeeping. • Company employee communication. • Compensation & benefits administration and recordkeeping. • Maintenance of employee files and the HR filing system • Day-to-day efficient operation of the HR Office Skills Required: • Grade 12 • Completed HR qualification • Computer literate (Word, Excel and Outlook) 3. Financial Manager – Durban Key Performance Areas: • Develop, implement and manage the salaries and wages accounting section and the financial aspects of works order system together with delegated general functions relating to vehicle hire, fuel, petrol and diesel cards • Miscellaneous debtors and VAT • Manage the implementation of audit reports • Manage and implement strict control measures re the confidentiality of the input and output of salaries and wages • Authorised cheque signatory to review/release trade creditors and salary related payments Skills required: • B Com or equivalent with Accounting a major • 3 years experience in financial accounting environment 4.  HR Officer – Durban Key Performance Areas: • Provide an education, training and development administration / co-ordination service and a recruitment and selection administration / co-ordination service to the Port of Durban. • Provide training and development services to business units in the port to ensure the development of human capacity. Provide recruitment and selection services to business units in ensure the availability of manpower. Skills required: • NQF 5 ETD / HR related qualification (post matric certification – 12 months) • Drivers Licence Code B

Millions Raised for Disability in Southern Africa

Schools, companies and individuals across the country revealed their Rock Star Alter Ego’s at this year’s Casual Day 2011 to participate in the largest fundraising project for disability in Southern Africa. As on 8 September 2011, this year’s Casual Day campaign has raised R 4, 108 150 – that’s R 1, 889 168 more than last year!

The FUN-factor in this nationwide campaign was evident as we saw people dress up as different rock-personalities such as Lady Gaga, Ray Charles, Avril Lavigne and Ozzy Osbourne. With a decidedly Rock-Idols feel, the winners of Casual Day 2011 are:  People with disabilities!

 

 Casual Day was introduced as a rewarding incentive for South Africans to help make communities a better place to live for people with Epilepsy and other disabilities – thereby developing attitudes of inclusion, acceptance and equality.

EpilepsySouth Africawould like to thank each and every individual who supported this initiative, with special mention to Alexander Forbes, Old Mutual, Pathcare South Africa, Capitec Bank, MWEB, Reeds N1 City, PanSolutions, Coronation Fund Managers, ADP Projects, the Ceres Fruit Company, Aegis Media, McCarthy Toyota, Tomcat Advertising Agency, Audi Centre N1 City, Servochem and TFD Group.  You have made a direct contribution to the life of someone living with a disability.  The future will be a better place for people with disability, for you are involved in creating acceptance and understanding of disability throughout South Africa. 

 Remember that every R10 donation for an official Casual Day sticker helps to make a difference. If you are keen to get involved next year, please contact Wynand du Toit at 021 595 4900 or fundraising.no@epilepsy.org.za to be able to receive your Casual Day 2012 info as early as possible.

Casual Day to Rock you on 2 September

What does MWEB, Reeds N1 City, Alexander Forbes, PanSolutions, Coronation Fund Managers, ADP Projects, the Ceres Fruit Company, Aegis Media, Capitec Bank, McCarthy Toyota, Tomcat Advertising Agency and many other companies and individuals all have in common?  This year, they are all “Rock Stars” for people with disabilities, by joining Epilepsy South Africa National Office in participating in Casual Day 2011.

 

Every year on Casual Day, thousands of South Africans and their companies participate in this massive support drive for people with disabilities in South Africa.  Year after year, more and more people and companies buy their stickers for R10 to join in this fun and easy campaign, affecting change in thousands of South Africans’ lives.

This year, Casual Day really turns on the heat with the theme “Worn to be Wild”, and challenges people to dress up as their favourite rock stars!  Keep your eyes peeled for the likes of Ozzy Osborne, Shakira, Jimmy Hendrix and perhaps even The King himself – right there in your office!

Be sure sure to get your company involved in the day of laughs and goodwill, by contacting Wynand du Toit at fundraising.no@epilepsy.org.za or 021 595 4900.

Dress up, do team-building, have fun, and most importantly:  Join your fellow South Africans and show your support for services to people with disabilities.

Additional information:

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 a minimum one in every 100 people. It is characterised by recurrent seizures that occur because of incorrect electrical activity in the brain. There are many different causes of epilepsy: damage or abnormalities in the brain, lead or alcohol poisoning, degeneration, poor nutrition and many more, but in many instances the originating cause is still unknown.

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 – August 2011

FROM THE DESK OF THE NATIONAL DIRECTOR Dear Readers It might be seen as just another one of my duties to write an opening segment for our electronic newsletter, but for me this is truly a privilege to speak directly to the supporters and clients of Epilepsy South Africa.  This month is even more special for me as this will be the last time I get the chance to speak to you.  After 10 years with Epilepsy South Africa I will be leaving the organisation in September 2011 to further my career in the HIV/AIDS sector.  I wish all of you, the personnel, Board members and the organisation well and will carry fond memories of my time with Epilepsy SA.  I still believe that this is a brilliant organisation that can definitely turn obstacles into true potential and I know that together great successes can be achieved for people with epilepsy and all those affected by epilepsy. Once again we offer you a variety of articles in our newsletter. Let us first congratulate Mr Gary Westwood, the Director of our Free State and North West Branch who received the Community Builder of the Year Award by the Community Chest in Sasolburg.  We are very proud of you, Gary as you set a excellent example for the rest of the organisation to follow.  Keep this up! We also wish Gary and his family well as Gary was admitted to hospital for medical procedures which includes a stem cell transplant.  We hope and pray that everything will go well. We also pay tribute to Prof Bryan Kies who sadly passed away on 18 July 2011.  Not only did Prof Kies practice as a neurologist, helping thousands of people over the years, but he has also been very involved with our organisation and the Educational Trust of Epilepsy SA.  He has left deep footprints in the field of neurology and will always be remembered for his passion to make a difference for people with epilepsy.  It was an honour to have known and worked with such a brilliant and passionate person. Marina Clarke at the National Office completed four out of the nine provincial advocacy skills training workshops for small business associations and women entrepreneur associations.  This is hard work and involves a lot of travelling but we can already see the positive impact being made by this training in the various provinces.  The National Office has also postponed our Start and Improve Your Business (SIYB) Training of Trainers workshop to November 2011.  For more information peruse these articles or phone Marina Clarke at 021 – 595 4900. Thank you to Ndileka Mandaba from the Western Cape Branch who provided epilepsy training at the Grahamstown Think Fest on 1 July 2011.  This is not only an example of our willingness to raise awareness about epilepsy as a condition, but also of the exceptional team work and support that exists within Epilepsy South Africa.   The Western Cape Branch also got very creative on Mandela Day (18 July 2011) and partnered with Food Basket for Africa to assist them with preparing and planting a vegetable garden which will in the long run function as an income generation project for the workers of CareCraft Lansdowne. We also bring you some interesting national and international information, including the National Health Insurance, Prescribed Minimum Benefits (PMB’s) to ensure that you know your rights and a great article by Dev Odayar of Siyaka Consulting about employment of people with disabilities and skills development.  We also feature information about a web-based resource “We connect” which could assist people in respect of higher learning.  The International Bureau for Epilepsy (IBE) also announces their gallery for the Jubilee photo competition where you can view all the photos that was entered. In our facts corner we provide you with information about fetal effects of anticonvulsant treatment and more information about Sudden Unexplained Death in Epilepsy (SUDEP), a topic that is often not talked about.  Please let us know what else you would like us to cover in our epilepsy facts corner and we will ensure that your requests are met. As always we also inform you about our fundraising initiatives and I hope that you will buy and wear your Casual Day sticker with pride on 2 September 2011.  Read more about Casual Day in this newsletter and where you can obtain your Casual Day stickers.  You can support Epilepsy South Africa National Office by making your R10 donation – sms the word “true” to 38000. I don’t think people always know and understand how we appreciate every single cent that is donated to us.  We literally have our accountant running down the corridor announcing donations received and we celebrate by jumping up and down and shouting “yahoo!” before sending you a thank you note. Please continue supporting Epilepsy South Africa and please continue raising awareness about epilepsy!  There are still thousands of people with epilepsy in South Africa enduring discrimination or not receiving adequate treatment or services.  Together we can make a difference and turn obstacles into true potential! I wish you well! Noëline de Goede National Director Back to top Advocacy skills training for small business associations and women entrepreneur associations In our previous newsletter we reported on a series of advocacy training workshops to be held in all nine provinces.  These workshops are now a reality with the first four already held in Gauteng, the Northern Cape, Mpumalanga and the Free State. While the target group remained unchanged, the character of each of these workshops differed significantly, reflecting specific issues relevant to the associations in that province. The first workshop was held in Johannesburg on 25 July and attended by 16 participants representing organisations ranging from construction, finance and women entrepreneur associations and alliances.  A special thank you must go to Deloitte who made a training venue available free of charge in support of this work.  Issues raised during the workshop focused largely on gender policies with specific reference to gender equality.  The organisations highlighted specific issues such as literacy, leadership development, job creation through SMME development and local government support.  Some of the organisations participating in the workshop preferred to focus on internal rather than external advocacy, including increasing membership, formalising their operations and the establishment of infrastructure. The Northern Cape workshop was held in Kimberley on 1 August 2011 and attended by 12 women entrepreneurs.  The focus of this workshop differed significantly from the previous workshop held in Gauteng with a clear need being identified to establish a sustainable and vocal network for women entrepreneurs in this largely rural province.  Participants identified tender corruption as a major factor preventing women from starting and growing businesses.  As such, plans are underway to highlight this issue and secure the support of the Northern Cape Premier. 19 participants attended the Mpumalanga workshop held in Nelspruit on 3 August 2011 (representing both the public and private sector) and 17 the Free State workshop held in Bloemfontein on 5 August 2011.  Interestingly, employees of the Department of Labour showed much interest in this workshop given their focus on job creation.  As such, action plans generated during the workshop focused on creating awareness of the realities of employment services in the Free State. Five further workshops will be held in the remaining provinces:  Cape Town (Western Cape) on 11 August 2011 (fully booked);  East London (Eastern Cape) on 30 August 2011;  Durban (KZN) on 2 September 2011;  Rustenburg (North West) on 13 September 2011; and  Polokwane (Limpopo) on a date to be determined. For more information contact Marina Clarke on (021) 595-4900 or via email (economicdev.no@epilepsy.org.za). Back to top Training of entrepreneurial trainers Good news for anybody who would like to undergo training as an internationally accredited entrepreneurial trainer! The National Office has postponed the Start and Improve Your Business (SIYB) Training of Trainers (TOT) seminar scheduled for August 2011 to November. The seminar will be held at the National Office of Epilepsy SA in Parow, Cape Town from 7 – 18 November 2011.  A maximum of 16 candidates can be accommodated. The seminar fee is R7,500 per person and application can be made by contacting Marina Clarke on (021) 595-4900 or economicdev.no@epilepsy.org.za. Back to top July, a month of Independence The 4th of July was the celebration of the American Independence Day and all over the world Americans rejoiced in commemorating their independence. The month of July really kicked off with festivities regarding freedom…  Our own Tata Madiba celebrated his 93rd birthday on the 18th, and the entire world celebrated with him.  We all recalled his story of persistence, perseverance and finally independence and we honored once again our very own Nobel Peace prize winner! With Independence as a topic during July, National Office once again want to remind all our loyal and generous members, subscribers and affiliates, that one of Epilepsy South Africa’s most vital functions is to develop the independence of South Africans with epilepsy and other disabilities.  We need continuous support to do so, and want to appeal to everyone to contribute your R10 sms donations, even if it is only once a month.  You can do this by sending the word “true” to 38000 via sms.  Help us to grow independence into a daily celebration for all South Africans with epilepsy. Back to top Ready to Rock ‘n Roll on 2 September? Casual Day for persons with disabilities are just a few days away and excitement is building to see which Rock Stars wil arrive at the office on Friday, 2 September!  If you, your company, organisation or school have not yet joined in this largest, craziest campaign in support of South Africans with disabilities, you still have time left to order your stickers from your nearest Epilepsy South Africa Branch. National Office  021 595 4900 Gauteng  011 816 2040 Western Cape  021 703 9420 Free Sate & North West  056 811 5959 South Cape & Karoo  044 382 2155 Mpumalanga & Limpopo  013 254 0161 Whether you have a golden voice, sing in the car or in the shower, this year you too can become a Rock Idol!  Order your stickers today and show your support to people with disability in South Africa! Back to top Employers Benefit From Hiring People With Disability There is good reason for people with disability to be employed in the workplace.  South African employers increase their BEE (Black Economic Empowerment) ratings not only when they employ black employees and women, but also when they employ people with disability. Various research studies have been done and statistics compiled on the status of disability in South Africa. Although these studies are sometimes unclear and contradictory, it is commonly accepted that between 10-12% of the population is living with a disability. This means that: • Approximately five million South Africans are disabled • Approximately one in ten South Africans has a disability • Yet, less than one percent of all people employed in South Africa are disabled The National Skills Development Strategy Three target groups of people have been identified as those most vulnerable in South Africa today.  They are black youth, women and people with disabilities. The Department of Labour announced, at the launch of the National Skills Development Strategy in February 2001, that 4% of the learnerships connected to each Sector Education and Training Authority (SETA) should be offered to people with disabilities. This legislation makes it possible for people with disabilities to enter the employment arena more easily, with or without tertiary education.  It is therefore important to start preparing the disabled youth of South Africa for the workplace as early as possible. Legislation In terms of The Constitution, everyone is equal before the law and has the right to equal protection and benefit of the law. The state may not unfairly discriminate directly or indirectly against anyone with regard to race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, religion, belief, culture, language and birth.  Everyone has inherent dignity and the right to have their own dignity respected and protected. The Employment Equity Act seeks to achieve equity in the workplace, by promoting equal opportunity and fair treatment through the elimination of unfair discrimination and the implementation of affirmative action measures for black people, women and people with disabilities. The Code of Good Practice The Code of Good Practice gives guidelines to employers and employees on how to implement the key aspects of the Employment Equity Act in order to ensure that people with disability receive equal opportunities and fair treatment in the workplace. The purpose of the Code is to help employers and employees understand their rights and obligations, and to reduce disputes so that people with disability can enjoy and exercise their rights at work. Disability equity should not be seen only as a corporate social Investment, or as “the right thing to do”. It should also make good business, economic and social sense to employ people with disability. What is Disability? Many people (and organisations) get stuck trying to determine what a disability is – and what it isn’t. As individuals we all have our own perceptions, ideas and opinions on what disability is, and these are based on our experience, exposure, knowledge, biases and prejudices about disability. Disability is a condition caused by an accident, trauma, genetics or disease, which limits a person’s mobility, hearing, vision, speech, and intellectual or emotional functioning. People with disability have a long term or recurring physical, sensory, or mental health problem, which substantially limits their prospect of getting employed or promoted in the workplace. “Long-term” means that the impairment has lasted, or is likely to persist, for at least twelve months. A short-term or temporary illness or injury is not considered to be a disability. A “recurring” impairment is one that is likely to occur again.  A progressive condition is one that is likely to develop, change, or recur.  People living with progressive conditions or illnesses are considered to be people with disabilities once the impairment starts to be substantially limiting. An “impairment” may be physical or mental.  A “physical” impairment implies a partial or total loss of a bodily function or part of the body.  It includes sensory impairments such as being deaf, hearing-impaired, blind or visually-impaired.  “Mental” impairment refers to a clinically recognised condition or illness that affects a person’s thought processes, judgment or emotions. An impairment is “substantially limiting” if it imposes considerable difficulty on the person performing the essential functions of a job. This is determined by considering the extent, duration and impact of the person’s impairment. If a person has more than one condition, these should be considered together to assess if their effect is substantially limiting. The following instances would not fall under the umbrella of disability: • The wearing of spectacles or contact lenses unless the person’s vision remains substantially affected in spite of wearing these visual aids • Compulsive gambling, and a tendency to steal, or light fires • Sexual behaviour disorders • Disorders that affect a person’s mental or physical state, which are caused by the use of illegal drugs or alcohol, unless the person is participating in a recognised programme of treatment • Normal deviations in height, weight or strength, common personality traits, and conventional mental and physical characteristics • Self-imposed body adornments such as tattoos and body piercings Educating Employers to Accommodate People With Disability Site Audit In conjunction with the facilities manager at the Company (or a suitable company representative), the disability management consultant conducts a physical environmental audit of a company’s facilities and offices to identify gaps and assist the company in making reasonable accommodation for individuals with disability. The audit process entails: • Assessing the business area • Doing a risk analysis • Ensuring that occupational health and safety procedures are in place • Clarifying the types of disability that can be accommodated by the business • Identifying suitable job positions for people with disability • Stipulating the reasonable forms of accommodation that will be required • Making adjustments in order to accommodate disabled employees Reasonable accommodation includes, but is not limited to: • Adapting existing facilities to make them accessible • Adapting existing equipment, or acquiring new equipment including computer hardware and software • Re-organising workstations • Changing training and assessment materials and systems • Restructuring jobs so that non-essential functions are re-assigned • Adjusting work time and leave • Providing essential supervision, training and support in the workplace Disability Recruitment Siyakha Search and Selection has successfully completed multiple projects involving the recruitment of people with disability.  In each instance, employers have been educated about the Employment Equity Act and the Code of Good Practice. Employers should reasonably accommodate the needs of people with disabilities in the most cost-effective way possible.  The aim of accommodation is to assist the disabled person to fulfil the essential functions of his or her job in order to enjoy equal access to the benefits and opportunities of employment.  Providing reasonable accommodation also aims to reduce the impact of the impairment on the person’s capacity to fulfill the essential functions of a job. At Siyakha, we present employers with a business case for disability that shows a direct benefit for both the organisation and the disabled employee.  We also train and sensitize the current workforce before a person with disability is brought into the workplace.  This allows for a smooth integration of the individual with disability into the workplace. Fortunately, more and more organisations that recognise the value of employing people with disability are coming on board. Clients at Siyakha Consulting include Sun International, Discovery, Transnet Freight Rail, Standard Bank and Alexander Forbes, amongst others. Quotes “Less than one percent of all people employed in South Africa are disabled” “The aim of accommodation is to assist the disabled person to fulfil the essential functions of his or her job” “It should make good business, economic and social sense to employ people with disability” For more information, please feel free to contact: Dev Odayar Disability Champion Siyakha Consulting (Pty) Ltd people performance productivity Tel +27 11 706 9006 Cel +27 83 233 7983 Fax  086 664 5665 dev@siyakha.co.za http://www.siyakha.co.za           Back to top BRYAN MICHAEL KIES   2 February 1949 – 18 July 2011 We pay tribute to Prof Bryan Kies who sadly passed away on 18 July 2011 Prof Bryan Kies was born at Number 24 Selborne Road, University Estate on 2 February 1949. He earned the MBChB degree with honours from UCT in 1971, and proceeded to specialise in General Medicine and Neurology at Groote Schuur Hospital form 1073 to 1977. In 1976, he was admitted to the Fellowship of the College of Physicians of South Africa, and was subsequently awarded Membership and then Fellowship of the Royal College of Physicians of London, and later, Fellowship of the South African College of Neurologists. Bryan was a Specialist Neurologist at Groote Schuur Hospital where he was known by all as a wonderful, caring doctor, whose patient care included outreach into the community. Over the course of his career, his academic achievements were many, and included numerous scientific publications, involvement in important research endeavours and supervision to success of several postgraduate students in his field, leading to his ad hominem promotion to Associate Professor of Neurology at the University of Cape Town. He dedicated his life to the care of patients with neurological disorders and the training of generations of students and specialists in neurology at Groote Schuur Hospital. His clinical expertise and academic prowess was generously shared with special interest groups and the wider medical community of Cape Town, and extended way beyond the borders of the Western Cape. He made regular visits to hospitals in the Eastern Cape, distinguished himself as an Africa-wide expert in the management of patients with epilepsy. The Epilepsy SA Educational Trust was first known as the Mick Leary Education Trust and was established in January 1999. Prof Bryan Kies was one of the founding members that embraced the vision of the trust and together with his fellow trustees perused and assessed numerous applications form all over the country. The Trust sincerely appreciated the 12 years of voluntary time, skills and specialist knowledge in respect of epilepsy given by Prof Bryan Kies. His passionate support and interest in the students will be missed. He was a true advocate for people with epilepsy. Bryan passed away peacefully at St Lukes Hospice on Monday 18 July, after more than two years of a devastating illness, bravely borne. He will be remembered as a special son, brother, uncle and family member, as a dedicated doctor, teacher and leader, as a committed comrade and as a best friend. His incredible courage in the face of tremendous adversity will remain forever as the hallmark of this remarkable man, and will continue to be an inspiration to all whose path he crossed. We pay tribute to Prof Bryan Kies who, sadly, passed away in July 2011. His passionate support and interest in the students will be missed. He was a true advocate for people with epilepsy. Back to top Think Fest in Grahamstown – 1 July 2011 The branch was asked to assist National Office by doing epilepsy training at the Think Fest in Grahamstown.  We are very proud of our social worker, Ndileka Mandaba, who took the opportunity and for the first time, flew to Port Elizabeth and travelled to Grahamstown all on her own. The training was done at Rhodes University to an audience of about 18 people made up of Pharmacists, Occupational Therapists, Speech Therapists, and people working at the hospitals around the University. A few parents of people with epilepsy were also in attendance. The presentation which lasted for approximately 40 minutes, focused on: • Achievers with epilepsy, • What is epilepsy, • Causes Of epilepsy • Types of seizures, • Triggers, • Tests for epilepsy • Treatment, • Seizure management (do’s and don’ts), • Services rendered, • Where to go for help. The presentation was followed by a question and answer session which took about 20 minutes. The questions which were asked by the audience focused more on medical issues e.g. • One of the parents informed that their daughter’s speech has deteriorated after a seizure, and wanted to know what may have caused this • What about conventional treatment and the use of traditional medication? This was a great opportunity for the branch and feedback was given to National Office for follow up services. The professionals were very keen to partner with Epilepsy South Africa for service delivery in the area. Back to top Mandela Day 18 July 2011 Mandela Day is based on a simple concept: dedicate 67 minutes of your day in honour of Mandela who dedicated 67 years of his life fighting for social justice. Our Director took this opportunity and engaged the staff of Regional Office and the workers of Care Craft Lansdowne. In our dedicated 67 minutes, a presentation was done on Mandela Day, and an NGO, Food basket for Africa was asked to come and assist us with prepping and planting a veggie garden in the workers’ courtyard. Everyone participated quite enthusiastically with the preparing of the ground and the eventual planting of cabbage and spinach. The idea behind planting these vegetables is that it will be maintained by the workers and that the vegetables will eventually be sold by the worker committee as an income generation project for the workers. The activity, a first of its kind here at the Western Cape Branch was well received by all and as our Director quite aptly put it, “as much as we engage our clients  in the community in these type of activities, we should not forget that “charity begins at home”” Back to top Policy Paper on National Health Insurance The long-awaited policy paper on National Health Insurance (NHI) was published in the government gazette on Friday for public comment. The Green Paper as it is known spells out  the government’s approach to the transformation of South Africa’s healthcare financing system through the adoption of a National Health Insurance (NHI) model. The NHI model will ensure that all citizens of South Africa (and legal permanent residents) are provided with essential healthcare, regardless of their employment status and ability to make a direct monetary contribution to the NHI Fund. This will be achieved through the regulation of private sector healthcare pricing and the improvement in the quality of healthcare as well as the strengthening of the planning, information management, service provision and overhauling of management systems of the public healthcare system. What healthcare services will be funded by NHI? The NHI will offer access to a defined package of comprehensive health services based on a Primary Health Care (PHC) approach, with a strong focus on health promotion and preventative care. Quality curative and rehabilitative services appropriate to this level of care will also be rendered at a secondary, tertiary and quaternary level. The NHI service package will be delivered via a District Health System (DHS) according to three main streams, namely: District-based clinical specialist support teams; School-based PHC services and Municipal Ward-based PHC agents. In addition, PHC services will be delivered through accredited and contracted private practitioners practicing within a District. These providers will be reimbursed using a risk-adjusted capitation system linked to performance management. How much will the NHI cost and how will it be funded? The government intends implementing the NHI model gradually over a 14-year period and estimates the cost at R125 billion in 2012, increasing to R214 billion in 2020 and R255 billion in 2025 (figures expressed in real 2010 financial terms). The Green Paper makes the point that the estimated cost of NHI should be placed within the context of current total healthcare spend (including medical aid contributions estimated at R92 billion in 2010) estimated at R227 billion in 2010 or 8.5% of GDP. The Green Paper also assumes that the increased spending on NHI will be partially offset by the likely decline in spending on medical schemes (as all South Africans will be entitled to access NHI services). While the policy paper acknowledges that the NHI will require an increase in spending on healthcare from public resources that is faster than projected GDP increases, it makes the point that the ultimate estimated level of spending on NHI relative to GDP (of 6.2%) is less than current government spending and medical scheme contributions combined (of 8.5%). In terms of the funding for NHI, the Green Paper is vague in the detail. It emphasizes that funding will come from a combination of sources including the fiscus, employers and individuals and that the subject is a matter of continuing technical work with further clarity to be provided in the next six months. Who is required to join the NHI? Membership to the NHI will be mandatory for all South African citizens however the general public will be allowed to continue with voluntary medical scheme membership if they choose to do so. In other words, while participation in the NHI will be a matter of choice, the payment of a contribution to the NHI will be mandatory for all citizens and legal permanent residents who earn above a certain income. What is the role of medical schemes in the NHI system? Although lacking in specifics, an encouraging aspect of the NHI Green Paper is the provision made for the continued existence of medical schemes while acknowledging that the exact form of services offered by medical schemes may evolve into a fully-fledged NHI system. The existing expertise in the area of private healthcare administration and management of insurance funds is also seen as relevant to the development of adequate in-house capacity. How will the NHI be rolled out? In 2012 the first steps towards the implementation of the NHI will be rolled out through a process of piloting. Based on the results of a national audit of 53 healthcare facilities conducted by the Department of Health, 10 districts will be selected for the pilot phase. The funding for the pilot phase will be via a conditional grant from the Treasury.  Thereafter additional districts will be rolled out on an annual basis provided conditions for inclusion are compiled with. The first 5-years of the NHI will include the pilot studies as well as the strengthening of the public health system including the establishment of  an NHI Fund. The Fund will be established as a publicly administered government-owned entity reporting to the Minister of Health and Parliament. Although the Green Paper refers to a preferred single-payer entity model with the responsibility to pool funds (collected by SARS) to purchase health services from the contracted public and private healthcare providers, the policy paper  does concede that a multi-payer system may be explored as an alternative. Cosatu has publicly opposed a multi-payer system. The next steps The purpose of the Green Paper is to outlines the broad policy proposals for the implementation of the NHI which is published for public comment and engagement. After the 2-month consultation process ends, a White paper will be finalised and thereafter draft legislation will be developed and published for further public engagement, before the legislation is finalised and submitted to Parliament for consideration and approval. Alexander Forbes – Health Back to top JUBILEE PHOTO COMPETITION – INTERNATIONAL BUREAU FOR EPILEPSY (IBE) IBE announced the opening of the gallery of the Jubilee Photo Competition on 18 July 2011.  To view the photographs for both the Camera and Mobile Phone categories, please log on to http://www.ibe-epilepsy.org/jubilee/jubilee-photo-competition.   The photographs are grouped by date of receipt and numbered accordingly.  Each file includes information on the photographer and the individual photograph. The Competition winners will be announced during the 29th International Epilepsy Congress in Rome at the end of August where an exhibition of the 50 best photographs will be staged. IBE expressed its appreciation to everyone who contributed to and assisted in promoting this initiative. Back to top We Connect Now Dear Southern African Association For Learning and Educational Differences, I am a college student with a learning disability who is enrolled at Louisiana State University. I received a grant from YP4 in 2008 to develop a website to serve college students with disabilities in an effort to connect and integrate them more as a virtual community with a voice on important issues. I would like to share the link of the We Connect Now website with you so that you may share it with the students that you have contact with. The website can be accessed at http://weconnectnow.wordpress.com/ The website has been used as a resource by institutions of higher learning and has been linked by colleges and universities and groups serving people with disabilities in 50 states and at least 5 foreign countries. I thank you for any and all help that you and your office may give me in promoting this project as a service to all college students with disabilities. Sincerely, Gabriela McCall Delgado Back to top Parysenaar vereer vir gemeenskapsbetrokkenheid ‘n Parysenaar het vanjaar die eer te beurt geval om uit die hele Gauteng/Vaaldriehoek/ Fezile Dabi streek aangewys te word as die Lura-gemeenskapsbouer van die Jaar. Gary Westwood, direkteur van Epilepsie Suid-Afrika se Vrystaat en Noordwes-tak het tydens die algemene jaarvergadering van die gemeenskapskas die spog toekenning van mnr. Ian Kennon, president  van Lusa, ontvang. Die toekenning word jaarliks oorhandig aan die persoon wat merkwaardige en onbaatsugtige  werk in die gemeenskap doen. Gary is n man wat glo in betrokkenheid by die gemeenskap. Vir hom is sy werk nie beperk tot sy werksaamhede by Epilepsie Suid-Afrika nie, maar maak hy seker dat hy help waar ookal daar hulp nodig is om ‘n verskil in mense se lewens te maak. So het hy gehelp om 25 groentetuine in die groter Parys te vestig, ‘n HIV/Vigs-program in onder meer Tumahole en Mokwallo van die grond as gekry, ‘n ondersteuningsgroep vir epilepsielyers in die Noordwes-provinsie gestig en selfs toegesien dat mediese hulptoerusting beskikbaar gestel en gemonitor word vir bruikhuur in die Noordwes-provinsie. Met sy hulp is meer as R2,4 miljoen se geldelike hulp aan verskeie groepe bewillig waaronder ‘n teatergroep. Dan is hy ook nog by die Gemeenskap Polisiering Forum (GPF) in Parys betrokke waar hy waardevolle werk doen. Back to top Epilepsy Facts Corner Fetal Effects of Anticonvulsant Polytherapies: Different Risks from Different Drug Combinations In the online version of Archives Neurology, June 13, 2011, Doctors Holmes and colleagues from the Massachusetts General Hospital for Children and the Harvard School of Public Health, the Departments of Obstetrics and Gynecology and Pediatrics, Loyola University Health System, present results from an analysis of the North American Antiepileptic Drug Pregnancy Registry between February 1, 1997 and June 1, 2010. Information on antiepileptic drug use and demographic characteristics was collected in three telephone interviews across the United States and Canada. Six thousand eight hundred fifty-seven (6857) pregnant women taking an antiepileptic drug for any reason were included in the analyses. The investigators found that the risks of malformations was 1.9% amongst infants exposed to lamotrigine as the sole medication; however, it rose to 9.1% when lamotrigine was combined with valproic acid; 2.9% when lamotrigine was added to any other antiepileptic drug. The risk of malformations was 2.9% for infants exposed to carbamazepine as sole therapy, as opposed to 15.4% for carbamazepine with valproic acid, or 2.5% for carbamazepine with any other antiepileptic drug. The investigators concluded that the risks of malformations among infants exposed to lamotrigine and carbamazepine in combination was higher than whether these individuals took each of these medications as the sole finding. This study is important because it is one of the few to address the issue of combination therapy and risks to unborn children, as opposed to single therapy, which is the way most pregnancy registries are reported. This study underscores the point that has been made by previous studies showing the risks associated with valproic acid use. It also shows that combination therapy also increases one’s risk for potential problems to occur. This is another important finding in our understanding of what are the risks to women with epilepsy who become pregnant while taking medication. Who is at Risk for SUDEP? In the June 2011 issue of the journal Epilepsia, Drs. Hesdorffer and colleagues from a number of institutions from both the United States and Europe present an analysis of four case-controlled studies from the United States, Sweden, Scotland and England to define particular risk factors of individuals who may be at risk for SUDEP (Sudden Unexpected Death in Epilepsy). Early onset refractory symptomatic epilepsy with frequent generalized tonic-clonic seizures and needing to take more than one anti-epileptic drug appear to be important predictors. The results also suggest that reduction in the number of generalized tonic-clonic seizures is a priority and of more importance than reducing the number of anti-epileptic drugs as an individual risk factor. This research is an important study because it helps to further our knowledge of identifying individuals early on in their condition who may be at risk for sudden death from seizures. Further work needs to be done in order to understand these risk factors fully and also to develop strategies on how to prevent SUDEP from occurring.

Flash mob draws attention to National Epilepsy Week

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

FROM THE DESK OF THE NATIONAL DIRECTOR 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 Back to top

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. Back to top

THE VOICE OF WOMEN ENTREPRENEURS 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. Back to top

DID YOU KNOW? SMS STANDS FOR ‘SEE MORE SMILES’! 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”! Back to top

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. Back to top

REDILEV SHORTAGE 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. Back to top

EASTER PARTY AT THE DAGGAFONTEIN CENTRE 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. Back to top

RADIO INTERVIEWS 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. Back to top

NATIONAL EPILEPSY WEEK 2011: 20 – 26 June “TURNING OBSTACLES INTO TRUE POTENTIAL” 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. Back to top

CHILD PROTECTION MONTH CELEBRATED IN THE WESTERN CAPE 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. Back to top

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   STUDY SHOWS POSSIBLE HEALTH RISKS OF ENERGY DRINKS ON YOUNG PEOPLE WITH SEIZURES 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

Epilepsy SA Newsletter – April 2011

FROM THE DESK OF THE NATIONAL DIRECTOR April is a month with many special days and public holidays: 22 April 2011 – Good Friday 25 April 2011 – Family Day 27 April 2011 – Freedom Day As South Africans we have a lot to be thankful for, but unfortunately there are still battles to be won, especially the fight against discrimination towards people with disabilities. It is my hope that you will especially think of people with epilepsy on Family Day and Freedom Day, in a hope that people with epilepsy will be fully included in society. In this month’s newsletter, you will read about the progress that has been made in the organisation in respect of economic development, youth and human rights. We also included many articles of gratitude toward funders supporting our programmes across South Africa. Lastly, you will find an article in our Epilepsy Facts corner warning all people with epilepsy to take care with any additional supplements or medication taken. Again, I would like to invite all our readers to become more involved in our organisation and our programmes. Write to us, visit us, send us your opinions and comments. It was exactly such a comment received, which lead to us adding in the Epilepsy Facts corner in this newsletter. This is proof that we do appreciate and recognise all comments received. May you have a blessed April month! Noëline de Goede Back to top

ENTREPRENEURSHIP EXPO FOR PEOPLE WITH DISABILITIES In celebration of the human rights of people with disabilities, the Small Enterprise Development Agency (SEDA) contracted the National Office of Epilepsy South Africa to host an entrepreneurship expo. The Expo took place in Cape Town on 22 March and aimed to raise awareness about entrepreneurship as a career option for people with disabilities. Exhibitors included the National Department of Trade & Industry, small enterprise development agencies, sector education and training authorities, training providers and entrepreneurs with disabilities. Back to top

NATIONAL OFFICE NEWS Forward… March! The month of March is derived from the first month of the ancient Roman calendar Martius, named after Mars, the Roman god of War – and how very appropriate: This month we celebrated International Women’s Day on the 8th, as well as the South African Human Rights day on the 21st. We celebrated the rights of all people, but especially the more marginalised groups. We remembered the war or struggles that people had to endure before the eventual establishment of equality and acceptance. We celebrated basic human rights, the right to inclusion, the right to have proper access to health care and education, the right to freedom and security of person, of privacy – the right to life! We also reminded ourselves that in many instances, the war on equality, inclusion, acceptance and basic rights are still hard fought. National Office is definitely marching on in the fight against the discrimination of people with epilepsy and other disabilities. We will continue the war to eradicate the stigma surrounding the condition and apply our weapons to the acceptance and inclusion of people with epilepsy and other disabilities into mainstream society. The Troops Although a small staff complement at National Office, we are a dynamic and driven team with strong motivation to accomplish our goals, but we need help. Battle’s aren’t fought and won by only a handful of people. One needs generals, strategists, cavalry, ground troops, artillery and sea and air support – a whole complement of people coming together to add skills, experience and knowledge in order to become victorious. Our appeal is therefore that regardless of who you are or where you come from, there might be something that you can do to help fight for the rights of people with epilepsy and other disabilities. Please join our forces as volunteer by contacting me at National Office on (021) 595-4900 or via e-mail at fundraising.no@epilepsy.org.za . You can make all the difference in the result of this fundamental effort. Become one of our troops! At the recent NASA (Neurological Association of Southern Africa) congress in Durban, Cipla Medpro came forward with a remarkable addition to our forces with a contribution of R20,000. We thank Cipla not only for this contribution, but for their continuous support and assistance – for being our Cavalry in this noble battle. The Weaponry A good strategist will tell you that rather than loads of weapons, you need only a few of the correct weapons to defeat a specific enemy. Our enemies are ignorance, discrimination, stigma, exclusion and we have decided on our strategy and campaign to combat these: We call it the Building True Potential Campaign http://www.epilepsy.org.za/nationaloffice/fundraising/index.php with its five Walls of True Potential as its foundation and support. The Wall of Acceptance http://www.epilepsy.org.za/nationaloffice/fundraising/wall_of_acceptance.php– to attack discrimination and ignorance with proper education about the condition and the rights of people with epilepsy and other disabilities. The Wall of Opportunities http://www.epilepsy.org.za/nationaloffice/fundraising/wall_of_opportunities.php– to defend our services, our weapons, in a financially sustainable way so that we can respond immediately and can continue to address the needs of our clients. The Wall of Health and Wellbeing http://www.epilepsy.org.za/nationaloffice/fundraising/wall_of_wellbeing.php– to defend our clients against the above enemies and ensure optimal psycho-social functioning of those living with epilepsy and disability. The Wall of Empowerment http://www.epilepsy.org.za/nationaloffice/fundraising/wall_of_empowerment.php– to armor our clients for the attacks from society and outfit them with the correct weapons for their battles by providing life- and skills training, training in entrepreneurship and opportunities for income generation. The Wall of Good Governance and Excellence http://www.epilepsy.org.za/nationaloffice/fundraising/wall_of_excellence.php– to strengthen and grow our forces with continuous assessment, improvement and development so that we are always equipped with the right weapons to continue the march… Join the Battle All you need to do to join this important battle is to decide which Wall of the Building True Potential Campaign http://www.epilepsy.org.za/nationaloffice/fundraising/index.php you want to support. These Walls form the foundation of the campaign and we need you to help us to build them into strong forces of attack and defence. We have everything ready, the weaponry and the defences. All we need now is for you to add your bricks to these Walls of True Potential. Click on the wall of your choice and follow the easy steps to make sure that the battle continues, and that once and for all, we will all be conquerors in this vital cause. Back to top

NEW HYDROPONICS TUNNEL FOR THE GAUTENG BRANCH The new hydroponics tunnel, sponsored by the DG Murray Trust, at the Geduld residential care centre in Springs has yielded its first tomato harvest. The crop is exceptional and is being sold at the Springs market as well as the local mini market. The centre is also supplying our Daggafontein centre’s kitchen with fresh tomatoes daily and selling directly to the public at R7.00 per kilogram. Back to top

A NEW WORKSHOP IN SPRINGS Work on the new East Rand Protective workshop at the Geduld centre (sponsored by the National Lottery Distribution Trust Fund) is progressing on schedule with the roof recently being completed. Centre Manager Juanita de Canha reports that the building will be completed within the next four weeks. Back to top

NOSA DONATES OVERALLS NOSA CEO, Gary Streek and Client Liaison officer, Evadné du Preez presented Magdaleen Kruger (Director of the Gauteng Branch) with 100 overalls on 3 March 2011. The overalls will be used by employees in the East Rand Protective workshop. Back to top

CASUAL DAY VISITS THE DAGGAFONTEIN CENTRE, SPRINGS Three representatives from Casual Day visited the Daggafontein residential care centre in Springs on 30 March 2011 to take photographs and write an article on improvements made to the centre with funds generated via the organisation’s participation in the annual Casual Day fundraising campaign. Back to top

GAUTENG YOUTH CAMP 15 young people with epilepsy are eagerly looking forward to attending an all expenses paid Youth Camp from 6 to 9 April 2011. The camp was sponsored by the Murray & Roberts Letsema Sizwe Fund and will be held at Stable Inn Conference Centre. Five Epilepsy SA staff members will act as facilitators at the camp. Back to top

DISABILITY AND HUMAN RIGHTS CAMPAIGN The Western Cape Branch ran a Human Rights and Disability Poster Campaign from 18 to 25 March 2011. A week was dedicated to raising awareness about disability and human rights to link up with the celebration of Human Rights Day on 21 March. As part of our awareness raising activities, the social workers endeavored to create knowledge and understanding about human rights and disability through talks at our protective workshops, projects, Community Health Centres, Government Departments, Libraries and Schools. In addition to increasing awareness and understanding, three schools (specifically the Grade 5 learners) were invited to campaign with us through illustrating their understanding of disability and human rights in poster form. We are excited to see the outcomes of the posters when school commences for the second term. Back to top

THE FREE STATE & NORTH WEST BRANCH SAYS THANK YOU Thank you for your support! Today is the end of yet another financial year. It is not easy for a welfare organization to get through a financial year without the loyal support of businesses and individuals. Some of our supporters are so regular that they are friends. With the support, we were able to provide the following services. • Community Development in rural communities • Home Based Care to bedridden community members • Mental Health services • Education and advocacy to companies, schools and individuals • Residential Care to Adults with epilepsy and or other disabilities • Developed our staff to provide and improve service delivery • Food security to community members • Victim empowerment • Entrepreneur development • Day Care to community members of Tumahole, Parys, Mokwallo and Vredefort. THANK YOU! We are joyfully shouting, as it is all of you that made our hands strong in the work we are doing. We are always looking for new partners that can help us to help others, cherish the partners we have and be loyal to our clients. If you want to become involved or need to make contact with us, please call Tertius Meyer on (056) 811-5959 or email freestate@epilepsy.org.za. Back to top

THANK YOU SAB! The Free State & North West Branch cares for 84 adults with epilepsy and/or other disabilities at our residential care facility. We take pride in protecting the human dignity of our clients by always making sure that the facilities are clean, safe and attractive. At present, our facilities are in need of a fresh coat of paint. Thanks to SAB in the Vaal Triangle, two of the flats that needed the most attention were renovated, thus providing better living conditions to our residents. The flats now took like a home you can be proud of. On the Photo is Alta Cronje (Financial and Centre Manager) and Wilhelm Lategan (SAB) in front of a completed flat. Back to top

A NEW ECONOMIC EMPOWERMENT PARTNER IN VRYBURG A new project will be rolled out on 1 April 2011 to help people with disabilities to earn an income. This would not have been possible without the funding partnership with ABSA in the North West Province. Beneficiaries of this project will be manufacturing uniforms for school children in the community at an affordable price. The community is very happy about this project and cannot wait for production to start. ABSA gave the project a financial injection of R50,000 as start-up capital. With this money we will surely make a difference in the lives of our beneficiaries. On the Photo: the North West team of ABSA can be seen presenting the cheque of R50,000 to Goodwill Phajane of the Epilepsy South Africa Office in Vryburg Back to top

Epilepsy Facts Corner ON MY MIND: DRUGS AND SUPPLEMENTS THAT MAY INCREASE THE CHANCE FOR SEIZURES Article sourced from the March 2011 Epilepsy.com Spotlight Newsletter) One of the most commonly encountered consultations in my office has to do with individuals who have had a new single isolated seizure or those who have a history of well controlled epilepsy who have suddenly had a recurrence. One of the biggest culprits for why seizures may present or recur, includes the possibility that an individual has ingested a medication, whether over the counter or prescribed, that may had increased the risk towards seizures. These may include innocuous pills that one is accustomed to taking for pain relief or it could be illicit. Even some herbal supplements can increase the chance for seizures. This month’s column will itemise drugs, both over the counter or prescribed, and/or herbal supplements that may increase the risk for seizures. There are a lot of other medications that may cause seizures. Prescribed medications and medication groups that are often listed as possibly causing seizures include: • antidepressants, such as bupropion or tricyclic antidepressants neuroleptics, such as phenothiazines or clozapine • antibiotics • beta lactams • penicillins • carbapenems • quinolones • isoniazid • metronidazole • cyclosporin • diophyllin • meperidine • pseudoephedrine • tramadol Hormones may also increase seizures. This is particularly true for estrogens. Cancer medications that may augment the chance for seizures include the following agents: • anthracyclines • bevacizumab • cisplatinum • cyclophosphamide • cytarabine • etoposide • iphosphamide • interferon alpha • interleukin-2 • L-asparaginase • methotrexate • nitrosoureas • vincristine Sometimes drug abuse leads to seizures. Substances that can cause seizures by either taking too much or suddenly stopping it are listed below: • ethanol/alcohol • opiates: morphine, heroin, fentanyl, meperidine, oxymorphone, hydromorphone, codeine, oxycodone, hydrocodone • sedatives and hypnotics, such as: benzodiazepines, barbiturates, ecstasy, GABA hydroxybutyric acid • stimulants • combed cocaine • methamphetamine • methylenedioxymethamphetamine (MDMA) • hallucinogens • LSD • mescaline or peyote • psilocybin (or mushrooms) • PCP • marijuana • inhalants • alcohol Many individuals take over the counter supplements. In certain situations, the following supplements may be possibly associated with seizures: • ephedrine • pseudoephedrine • energy drinks especially when mixed with alcohol • phenylpropanolamine • creatine • gingko biloba • St. John’s Wort It is clear from the article that any additional medication should be discussed with your doctor before taking the medication. Here are some other helpful tips: • Do not stop your medication abruptly. You could risk a medical emergency in the form of non-stop seizures which could be life threatening. • Attend all follow up appointments with your doctor. • Do not try other people’s medication. Even if your friend has better control with a different medication, check with your doctor first. • Alcohol and medication can be a dangerous combination. Both are depressants and one may affect the other. • Do not drive or operate power tools when starting a new medication until you know how it affects you. It may make you drowsy at fist. • Do not assume that if you missed a few doses of your medication you can then make them up safely by taking them all at once. What you need is a certain amount of medication, taken at regular intervals. • If you have trouble remembering to take your medication, try counting out each day’s supply of pills and storing them in special containers you can buy at the pharmacy. Put a reminder on your phone. • Do not run out of medication. If you are going on a trip, make sure you have enough to last until your return and carry a copy of your prescription with you. If you go overseas, find out from your doctor what the medication is called (drugs often have different names in different countries). • Keep all medication locked up and away from children.

Vacancy available at Epilepsy South Africa

Organisation:
Epilepsy South Africa National Office is a Non-Profit organisation dedicated to enhancing the quality of life of people living with and affected by epilepsy and other disabilities.

Position available:
Eastern Cape Co-ordinator

Location of Post:
Epilepsy South Africa Satellite Office in Eastern Cape

Post Requirements:
Tertiary qualifications in one or more of the following:

• Social Work (Registration with the S.A Council for Social Service Professional)
• Development studies
• SMME development

Experience in:

• Management
• Office and service development
• Networking and liaison with other NPO’s, CBO’s, Government Departments
• Fundraising
• Service planning and implementation
• Business plan development
• Advocacy
• Awareness and training
• Monitoring and Evaluation

Additional skills:

• Strategic thinking
• Good communication and interpersonal skills
• Commitment towards empowerment, skills development and poverty alleviation
• Code 08 driver’s license
• Computer Literacy
• Knowledge on local social welfare environment and entrepreneurial development
• Speak, read and write isiXhosa and English

 

Closing Date:
15 April 2011

 

Applicants are requested to please forward their CV’s to Karen Robinson.

E-mail: socdev.no@epilepsy.org.za

or

Fax (021) 595 4901

 

Please note that only shortlisted candidates will be contacted.

If you did not receive any feedback by 19 April you may deem your application as unsuccessful.

 

Epilepsy SA Newsletter – March 2011

FROM THE DESK OF THE NATIONAL DIRECTOR Dear Readers With the State of the National Address and National Budget Speech clearly focussing on job creation and economic empowerment, I am happy to state that Epilepsy South Africa has already been focussing on economic empowerment since 2005. With the heavy thrust from Government in this area, we will hopefully see much more being done to create employment for people with disabilities in South Africa as well. As an organisation, we commit ourselves to work with Government to specifically highlight the needs of people with epilepsy and other disabilities. In this month’s newsletter, you will read about the exciting events taking place across South Africa; from the first Epilepsy and Human Rights Advocacy Conference that took place in Stellenbosch, to the Sandscapes fundraising event hosted by the Western Cape Branch, a golf day and a cabaret being hosted by Mpumalanga Branch, a Valentines dinner for the residents at the care centre of the Free State Branch and the Special Olympics that the Mpumalanga clients participated in. We also share basic information about seizure management in the new Epilepsy Facts Corner, which is a new addition to our electronic newsletter. If you have specific topics that you would like us to cover in our Epilepsy Facts Corner, please let us know by e-mailing socdev.no@epilepsy.org.za If you wish to become more involved with our organisation, please contact your closest Epilepsy SA Branch by phoning 0860 EPILEPSY (0860 374537) or contact the National Office at tel no. 021 – 595 4900. Regards Noëline de Goede Back to top

Building True Potential Campaign – February, a month of THANK YOU’S! With the launch of the Building True Potential Campaign during January at the National Office, we focused predominantly on three initiatives, namely an appeal to churches and community clubs; the Kruger Rand raffle; and the Building Bricks project. With expectations set realistically during this time of the year we were pleasantly surprised by the response we received! February was a month filled with goodwill, support and contributions from so many different people, companies and communities. Acknowledgement and Thanks! For the Building Bricks Project  http://www.epilepsy.org.za/nationaloffice/fundraising/index.php we would like to thank: Lee-Ann du Toit, Oscar Cupido, Marietjie Scannell, Raakesh & Nirusha Sebnath, Amy Thomson, Charl van Niekerk, Ben de Goede, Tim de Villiers, Nokukhanya Sikhosana, Judy Young and the Lions Clubs of Fish Hoek, Sue Charles and the Lions Club of Kirstenbosch, Malcolm & Annette Thomson and Noëline de Goede. To date, we have sold a total of 33 bricks. Thank you, once again, to all our contributors! To view their individual contributions and to see who is the top brick-layer, please visit the Scoreboard  http://www.epilepsy.org.za/nationaloffice/fundraising/score.php on our website. Construction continues For only R250, you can have your name displayed on the Walls of True Potential, while supporting our services to people with epilepsy and other disabilities. Please visit the Building Bricks Project  http://www.epilepsy.org.za/nationaloffice/fundraising/index.php and decide which one of the Walls you would like to support. Back to top

A Kruger Rand for R20! The Kruger Rand raffle is well under way with lots of potential winners buying their opportunities to become the next owner of a full, 1 oz Kruger Rand, a Campmaster™ trailer (for that overload on the long road) and a set of his & hers Fossil™ watches! This truly is a Huge Reward for a small donation! The official draw date has been extended to coincide with National Epilepsy Day on 21 June. To buy your raffle tickets for R20 donations and stand a chance of winning one of these fantastic prizes, contact truepotential@epilepsy.org.za, phone (021) 595-4900, or visit our raffle page on BidorBuy (click here). Acknowledgement and Thanks! Thank You to all who already purchased their raffle tickets, especially those on BidorBuy who bought multiple tickets to expand their chances in the draw. A big thank you to Laerskool Simon van der Stel in Wynberg who supports the Kruger Rand Raffle by participating in ticket sales during May, and our appreciation to those individuals that are selling tickets on our behalf. All of you are helping us to achieve real impact on the lives of people with epilepsy and other disabilities in South Africa. Get even more involved! If you have access to a place of distribution, are involved in a school outreach committee or want to volunteer to help sell the raffle tickets, please contact us at truepotential@epilepsy.org.za. Back to top

You can affect change today As loyal readers of our electronic newsletter, the Building True Potential Campaign gives you the opportunity to play your part in securing equal opportunities for people living with epilepsy. Please support this momentous drive and forward this campaign http://www.epilepsy.org.za/nationaloffice/fundraising/index.php to your friends, family, colleagues and Facebook contacts and know that today, you have made a difference. Back to top

NEWS FROM THE MPUMALANGA & LIMPOPO BRANCH Renovations on the Dullstroom residential care centre’s kitchen are well underway, with the tiling of the floor nearly complete and work on the kitchen cabinets having been started. Watch his space for a monthly update until the project is completed. The first Special Olympics sports event was held on 3 February 2011 at Belfast Platorand. Here, 25 of our Dullstroom residents competed. They took part in seven-a-side soccer, floor hockey, table tennis, volley ball and bocce. For those not familiar with these events, bocce (also known as bocce ball) is an Italian variety of lawn bowling, played on a dirt court that is shorter and narrower than the rink of a bowling green. This sport belongs to the boules sport family and derives its name from the plural of the Italian word boccia which means ball. Floor hockey is a family of indoor hockey games played on flat floor surfaces (e.g. a basketball court). Each team attempts to shoot a ball or puck into a goal using sticks, usually with a curved end. The same athletes will be competing on 17 March in Witbank at Thanduxolo Special School. We are very proud of them and wish them the best of luck with the Special Olympic calendar for 2011. This year, we embarked on a special project for our residents – an entrepreneurs’ challenge. We will be selling the first of their products at the Plat Du Jour flea market on 26 February. The residents are working in small groups and are busy with various activities, from baking koeksisters to selling raffles for start-up capital, French knitting, making dolls’ clothes and picture frames. On 19 March, we will be hosting a cabaret evening at the Epilepsy recreation Hall in Dullstroom. The band, Notes Unlimited, will be entertaining us with songs from the 60’s, 70’s and 80’s. Please contact us if you are interested in attending this fundraiser. Lastly, we want to remind all our loyal friends about our annual golf day on 12 March 2011, hosted together with Goggabies Nursery School at the Highland Gate golf course, just east of Dullstroom. Please support us at this event! For more information on any of our activities and events, please contact Riette or Elsa at the fundraising and marketing office on (013) 254-0161. Back to top

NEWS FROM THE FREE STATE & NORTH WEST BRANCH Contract Teach Residents Hand Skills Our Branch started a new contract in December 2010 to manufacture Fish Strops for Stevenson’s Fishing Tackle in Parys. What is marvellous about this contract? Not only are we earning an income, but the people working on the contract learned new skills, improved their hand movement and can take pride in their work. With each new “model” made, their self-image improves. The smiles on their faces says it all! “It takes concentration to tie the knots, but it is very much like the embroidery and beadwork that I do,” was the words of Nellie Loggenberg. We are proud of the good work people are doing and wish them the strength that they need. Well done!!! Back to top

Valentine’s dinner for residents February is the month of love with Valentine’s Day celebrated on the 14th. Thanks to the generosity of the community and a lot of hard work from the staff, we were able to treat our residents to their own Valentine’s dinner. With “braaivleis” and lots of food, they were able to enjoy the special evening. Dancing and gifts made their evening even more romantic and special. Thank you to every member of the community that gave a donation so that we could make this happen! Back to top

NEWS FROM THE WESTERN CAPE BRANCH SANDSCAPES 2011 was more than just Fun in the Sun We would like to thank all 400 invited guests who participated, contributed and attended our Sandscapes sandcastle and fun event held on Sunday, 13 February at Surfers Corner, Muizenberg Beach. The event was a huge marketing exercise and over a hundred people walking the beach showed interest and enquired about our services. By all accounts, it was certainly a great day out! Our special guests, the youth in Cape Town, were kept busy – from face painting to jumping castle activities to more high level sports activities, such as calypso cricket and beach soccer. Not to forget about their participation in the inter-school/homes sandcastle building competition. Marsh Memorial won the sandcastle competition for the 2nd year running! Back to top

W.CAPE – SANDCASTLE BUILDING The formal sandcastle building began in earnest with the corporate Maitland and family and friends groups. The sandcastles were impressive and definitely set the standard for future Sandscapes castles. This year the family and friends trophy went to Epilepsy South Africa’s National Office and the top Maitland team won in the corporate section. Back to top

W.CAPE – CORPORATE WINNERS The public was entertained by up-and-coming DJ, Lance de Kock, and the impressive MC, Carl Waisty from GoodHope FM. Our guest speaker for the day, Marlene le Roux, caught the imagination of the crowd with an inspiring and motivating opening speech. Back to top

W.CAPE – MOTIVATIONAL SPEAKER Sandscapes would not have been possible without sponsors and partners and we would like to thank Maitland Group, Touareg Tents, KFC, the City of Cape Town, GoodHope FM, Regal Rental, False Bay College, Sporting Chance, ETA, Roxy Surf School, SIP, Shiraan Watson jumping castles and Sanlam. For further information on Sandscapes and other events, go to www.epilepsyevents.org or simply LIKE us on Facebook! You may also visit our Epilepsy South Africa website for further information on our services (www.epilepsy.org.za). Back to top

Health and Wellness Week The theme for this year’s Health and Wellness Week was Compliance. A campaign was launched by short talks on compliance at our community health care centres and tertiary hospitals. A seizure diary was issued to all epilepsy clients attending the talk. Many people highlighted the value of talking about their medication and how to manage it correctly and further campaigns of this nature were encouraged for the future. During this campaign, we took our epilepsy lifestyle management and compliance talk to Pollsmoor Prison, where we held very interactive group sessions with the juvenile offenders of the male section. We reached a total of 133 offenders through this initiative.   Back to top

AN EPIC CONFERENCE! BY KIM SWARTZ (CONFERENCE DELEGATE FROM PORT ELIZABETH) Some delegates expected to make new friends, others wanted knowledge or to simply meet someone who knew how they felt. Well, if the Epilepsy Advocacy and Human Rights Conference held in Stellenbosch from 22 to 24 February 2011 is anything to go by, they were all wrong! The truth is, we received way more. In all honesty, no Mercedes Benz, Manolo Blaniks or Rolex could ever compare. There are no words that could begin to describe the tremendous comfort felt by all who attended; to have their feelings and their experiences heard, acknowledged and understood. And were they understood? Absolutely! In a way that only people who have had those same experiences, hurt and fears could understand. The Conference started off with guest speakers, like Michael Bagraim (Practising Managing Partner of Bagraim Attorneys), Marina Clarke (Deputy National Director of Epilepsy South Africa), Caroline Taylor (Client Support Officer for Inclusive Education in the Western Cape) and Nicole Ficks (Research Co-ordinator for the Learning Network). Not only did they hold the attention of all the delegates, but the wealth of information they offered us was empowering! Speakers like Tim de Villiers, Kai Fichen, Xolisa Nkonyei and Ntandazo Mange, were inspiring and offered overwhelming motivation. Whereas Tim de Villiers lit a flame in each delegate currently in areas where support groups are being run, Kai Fichen inspired every delegate with his tales of literally climbing mountains in his journey with epilepsy. Something that struck me about his story is that the hike up the mountain has more emphasis than reaching the peak. He spoke about his journey with people from all over the world, finding the funds required, his frozen feet, setting the goal – and although reaching the peak was clearly an achievement for him, the struggle getting there held just as much merit. The workshop and sessions on self advocacy and self image pointed out the same importance of the journey and struggle to get our voices heard – in fact the entire week did. The facilitators not only stressed the importance of our journey, their workshops did too. All and all, it was a wonderful week and each delegate felt exceptionally special, as human beings. Not only did the sessions run smoothly (thanks to the facilitators), but the atmosphere allowed for much interaction and fun among the delegates. Karen Robinson (National Social Development Manager), you have put together a week and experience of gold that no wealthy man could ever afford, but only the pauper who sees the beauty of a rising sun and feels he has it all! Facilitators themselves expressed their sincere gratitude for the opportunity to have all branches finally getting together. Owena Schutte, from the South Cape/Karoo Branch in Knysna, said, “It was most rewarding, well organised and especially the small groups went well – they involved even shy participants. It was therapeutic to a number of guys who have never voiced their inner feelings about their condition before. A number of them mentioned painful memories from the past that had to be dealt with. All in all, a great success, from the venue and excellent catering to the caring atmosphere and feeling of belonging – knowing you are not alone.” The accommodation was supreme, with woes attended to by staff who surpassed profession with warmth in all their services. Thank you, Epilepsy South Africa, for everything you have done for us: from plane tickets, accommodation, caring facilitators and knowledgeable speakers to ‘fabulicious’ meals! As for the delegates themselves – not one forgot to mention their gratitude in meeting people who are also living with epilepsy. Did they see people who also made downright fools of themselves by dropping to the floor with the “shakes”? NO! We saw PEOPLE who confirmed that we, ourselves, are normal. As Teboho Class commented, “The conference was an extremely wonderful experience and it was great being with people who live with the same condition, who understand the pain I’m going through. I wish we could have a follow up conference or workshop. To all the friends I made, I would like to remind you not to underestimate yourself and don’t forget that nothing about us is special without each other.” As the very first conference of its kind, it proved to be something needed and an abundant success that we all hope to repeat soon! Back to top

Epilepsy Facts Corner What is the best first aid for a seizure? Here are some tips if you or someone you love has epilepsy. Always carry medical identification. If an emergency occurs, knowledge of your seizure disorder can help the people around you maintain your safety and provide the appropriate treatment. Make sure your family, friends, and co-workers know what to do if you have a seizure. Avoid potential dangers of high places or moving machinery at home, school, or work if you have active seizures. Though there is less risk if your seizures are under control, your attention should focus on the specific risks of certain activities (such as mowing, working around farm machinery, hot appliances, etc). It is important for you to remain active, but participate in sports and other activities with caution. Avoid potentially dangerous activities, such as bathing, swimming, gymnastics, or mountain climbing without someone near by. Have another person with you who knows your seizure risk and is trained in life-saving techniques. Activities such as baseball, bike riding, canoeing, horseback riding, or hockey can be made safer by wearing helmets and/or life jackets and by having another person with you. If you are prescribed anticonvulsant medication, do not suddenly stop taking it or change the dosage without consulting your doctor. The type of anticonvulsant medication you are prescribed depends on the type of epilepsy you have, and the dose that is prescribed especially for you according to your weight, age, gender, and other factors. Be alert to the risks of possible drug interactions between your anticonvulsant drugs and other medications you may take, including over-the-counter drugs. Always call your doctor or pharmacist if you are not sure what interactions could occur before taking any medication. Avoid alcohol, as it can interfere with the effectiveness of your medication. Source: http://www.webmd.com/epilepsy/guide/first-aid-seizures?page=2, 21 February 2011

The Wall of Opportunities – To ensure the long term financial sustainability of all our programmes.Epilepsy South Africa ensures that they respond immediately and can continue to address the needs of those living with epilepsy and disability effectively by offering programmes and services that are impactful, of an exceptional quality… and sustainable in the long-term.