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| Name: | Piet Beukes |
| Email: | beux49{at}gmail.com |
| Where are you from: | Pretoria |
| Comments: | We have a grandchi of six who had two seizuresone year apart - we would like to know if there is a support group in Pretoria. |
| April 14, 2012 16:40:00 (GMT Time) |
| Name: | Leanne Schaefer |
| Email: | schaefer.leanneschfr{at}gmail.com |
| Where are you from: | East London |
| Comments: | My son Matthew who is 24 years old and is employed as a Floor Manager at a Spar in East London, is facing discrimination at his place of work by owner almost everyday. He has being in there employment for almost 2 years and in the 2 years he has being there he has only had 2 siesures which have accured at home and not in the working place. They are now trying to find every excuse in the book to get rid of him. this is now affecting his abbility to function properly on a daily basis. He has just started stuyding part time for his matric, which he loaned the money for the deposit and pays off every single month, as well as worrying how he is going to cover his accomidation and look after himself. Please advise us on what we can do about the situation and what legal steps can be taken to address this problem. I do know that there is a leagal system which helps epilepsy suffers to fight for there rights. Desperate for help, not first time facing discrimination. Kind regards Leanne |
| March 26, 2012 17:57:58 (GMT Time) |
| Name: | Stefan Prinsloo |
| Email: | StefanPrinsloohs{at}gmail.com |
| Where are you from: | South Africa Limpopo |
| Comments: | Baie intresant... |
| December 29, 2011 13:16:56 (GMT Time) |
| Name: | dhivina maria mudali |
| Email: | dhivina{at}webmail.co.za |
| Where are you from: | south africa.kzn |
| Comments: | wow,finally i can communicate with people on line.anyway i am 29yrs and had my first seizure during my matric year. i would like to communicate with more people. |
| August 8, 2011 12:27:07 (GMT Time) |
| Name: | dhivina maria mudali |
| Email: | dhivina{at}webmail.co.za |
| Where are you from: | south africa.kzn |
| Comments: | wow,finally i can communicate with people on line.anyway i am 29yrs and had my first seizure during my matric year. i would like to communicate with more people. |
| August 8, 2011 12:19:09 (GMT Time) |
| Name: | Yolande Hutcheons |
| Email: | yolande.hutcheons{at}corepeople.co.za |
| Where are you from: | Johannesburg |
| Comments: | HI My husband was diagnosed on Sunday and we know nothing about epilepsy. Just thought I would look at the site. Thanks Yolande |
| July 8, 2011 09:02:59 (GMT Time) |
| Name: | Delene Gombert |
| Email: | deleneec{at}gmail.com |
| Where are you from: | Johannesburg |
| Comments: | Congratulations on achieving so much my old friend. I have used your information and passed it on to a colleague who suffers from epilepsy. You can really be proud of all you have achieved. From Delene and George Gombert |
| September 17, 2010 11:44:27 (GMT Time) |
| Name: | Dalene Metcalfe |
| Email: | dmetcalfe{at}vodamail.co.za |
| Where are you from: | Kraaifontein, Cape Town |
| Comments: | My son is 23 years of age and had his first seizure at 18.We as a family have a hard time coping and would like to know of any support groups. Please feel free to contact me via email. Thank you. |
| August 25, 2010 17:53:06 (GMT Time) |
| Name: | Lezane van Niekerk |
| Email: | lezane.vn{at}live.co.za |
| Where are you from: | Jeffreys Bay |
| Comments: | Hi Lynn. I have exiting news!! Noeline de Goede phoned me back today. Hold thumbs that she can help in any way. She'll try to come back to me by the end of this week, as she'll be out of the office most of the week. Then even more exiting news!! Nathan's 1st consultation with Dr Butler is scheduled for the 21st of July!! A lady (who also had epilepsy and went for the op) offered to pay the consultation fee for him! I also have other news, but I'll give you a ring. Keep up the good work! You're a star and an ambassador!! |
| May 17, 2010 14:43:06 (GMT Time) |
| Name: | Lesley Donnelly |
| Email: | lesmal{at}vodamail.co.za |
| Where are you from: | KZN |
| Comments: | Hi, I found your website and am happy to join. I have suffered with epilepsy since the age of 16 years. Learn to accept the problem and be independent. Keep strong and talk to others. As the saying goes: "we are not alone". Let's keep together and share groups where we can communicate to each other. Keep well and happy. |
| December 12, 2009 04:27:52 (GMT Time) |
| Name: | CHARMAINE |
| Email: | charmainewalsh{at}hotmail.com |
| Where are you from: | GAUTENG |
| Comments: | I got in touch with Lyn to ask her about the operation. We had a long chat. I was was diganosed with epelipsy at 4 years old. Have lived with epelipsy my whole life. Consulted with several Doctors, but one Doctor in particular I saw in July this year, mentioned he would like to send me for the op. I can remember sitting in his office - feeling at peace when he mentioned the op to me. Not even knowing at the time if I would be a candidate. He sent my reports to the Doctor, who will be going over me. I phoned the Doctors rooms to see if I was a candiate or not the good news is "I'm going to hospital in November 2009, for obsevation to see if I can have the op" I very positive, strong and have faith I will be a candiate for the op. It will be life changing, and I'm looking forward to being 'SEZUIRE FREE FOR THE REST OF MY LIFE. God will be using the doctors to heal me. God Bless ONE THING I WANT TO TELL PEOPLE OUT THERE - NOBODY HAS EVER LOOKED OR TREATED ME AS IF I WASN'T ONE OF THEM |
| November 9, 2009 13:01:06 (GMT Time) |
| Name: | Heather-Anne Bender |
| Email: | benderh{at}trudon.co.za |
| Where are you from: | Benoni |
| Comments: | This website is a godsend. I have been suffering with uncontrolled TLE for 15 years now which has been my best kept secret. I look forward to sharing my story with all, in the hope that I can offer some for of support and assistance. Thank You Lyn |
| October 3, 2009 06:39:51 (GMT Time) |
| Name: | MAKHETHA MASOPHA ABRAM |
| Email: | msupero{at}webmail.co.za |
| Where are you from: | TOKOZA,ALBERTON |
| Comments: | I am 35 years of age studyng draughting at AFRICAN ACADEMY,Boksburg I feel blessed to read about positive opinion from different people.I now know that I am not alone and I feel strong.I will be happy to correspond with you.GOD BLESS YOU |
| September 23, 2009 15:33:18 (GMT Time) |
| Name: | Lyn |
| Email: | tyrevulc{at}gwisa.com |
| Where are you from: | Mpumalanga |
| Comments: | WHAT TO DO IF YOUR MEDICAL AID WON'T PAY FOR TREATMENT? Here's the good news, they are forced by law to pay for any treatment (incl. medication, tests etc) relating to your epilepsy as Epilepsy is a PMB condition under the medical schemes act. Irrespective of which medical aid option you are on or what your benefits are, they are not allowed to refuse or reject any treatment you may need to control your condition. They kept rejecting me all treatment, medicines and MMR's etc.which I had to pay out of my own pocket, amounting to thousands of rands. I have since insisted on my legal rights and expect to have my money refunded. If you have any problems in this regard contact the Council for Medical Schemes, they are very helpful. Many people have had severe injuries, lost their jobs and homes, even died because they could not afford to get the right treatment to control their seizures. Lives ruined and lost because medical aids are blatantly trying to cheat us so that the fat cats on the |
| July 28, 2009 09:14:24 (GMT Time) |
| Name: | Lyn |
| Email: | tyrevulc{at}gwisa.com |
| Where are you from: | Mpumalanga |
| Comments: | |
| July 28, 2009 08:57:39 (GMT Time) |
| Name: | Cindy Scott |
| Email: | c.scott{at}ema-partners.co.za |
| Where are you from: | Fourways |
| Comments: | I really need support. My husband has been living with Epilepsy for 2 years. He has TLE. He is now at home as he is going through severe depression. The Doc is changing his mood stablizer. How do I get through this on my own. I do not have any support from his parents as they will not accept his condition. He is not coping with work. He has a very stressful job in sales. Please help me. |
| July 9, 2009 10:12:16 (GMT Time) |
| Name: | Rami |
| Email: | 075583570{at}mtnloaded.co.za |
| Where are you from: | s.a (Gauteng) |
| Comments: | i'm a 34yr old lady living with epilepsy and busy with projects about epilepsy.i've just done the Epilepsy awarenss at work it was a success,i've learned that people still have lees education/knowledge about epilepsy and the myths.it is nice that i came across this site it is great and people call learn from. |
| July 1, 2009 10:37:57 (GMT Time) |
| Name: | Marche |
| Email: | info{at}bates.co.za |
| Where are you from: | Klerksdorp |
| Comments: | Nice website, need more info about schools for children with epilepsy, if someone could help I would really apreciate it. |
| June 11, 2009 13:02:23 (GMT Time) |
| Name: | Jenni Tonkin |
| Email: | jennitonkin{at}telkomsa.net |
| Where are you from: | Benoni, Gauteng |
| Comments: | I had my first grand mal seizure in 2003, roughly 6 months after my son was born. The neurologists that I've been to (3 in total)have been very "wishy washy" about the fact that I have epilepsy. I have been on 4 different medications, 2 of which have given bad side effects. I'm now searching for a new neurologist who can help me through a pregnancy. I plan to get pregnant towards the end of this year/beginning of next but need to find a specialist I am totally comfortable with. I still have seizures whilst taking medication, so would like to be seizure-free asap! |
| June 10, 2009 23:01:00 (GMT Time) |
| Name: | Magda Henrico |
| Email: | magdahenrico81{at}gmail.com |
| Where are you from: | Rustenburg |
| Comments: | My daughter has epilepsy and we dont seem to get it under controll with medication. She is 32 yrs old an d has 2 children. She was burnt severely a few months ago while having a seazure. We and she need support emotionally. Her marriage is falling to pieces and whe don't know where to get help. Anyone? |
| April 6, 2009 15:10:53 (GMT Time) |
| Name: | Mike |
| Email: | mike.jansenvanrensburg{at}scawfoundries.co.za |
| Where are you from: | King williams town South Africa |
| Comments: | Lynn keep up the good work ur hubby |
| March 7, 2009 21:25:11 (GMT Time) |
| Name: | Jaosn Smith |
| Email: | jasonsmithwa{at}yahoo.com.au |
| Where are you from: | Cape Town |
| Comments: | Hi Lynn I think you have done a great job with this website and if I can help or asist you or anybody else I would be more than delighted to help |
| January 29, 2009 10:08:29 (GMT Time) |
| Name: | Myhendra Naidoo |
| Email: | myhendra.naidoo{at}huletts.co.za |
| Where are you from: | Durban |
| Comments: | My son has epilepsy. Great article. I am hoping it can inspire him as well. |
| January 13, 2009 13:47:39 (GMT Time) |
| Name: | Marisa |
| Email: | medicalaction{at}Gmail.com |
| Where are you from: | Johannesburg |
| Comments: | Hi Lynn Thank you so much, you are an inspiration. Reading your story has helped me to accept the fact that I have Epilepsy as the first reaction is anger and disbelief. I now made it my own and can manage it. Keep up the good work. |
| November 16, 2008 12:39:42 (GMT Time) |
| Name: | Jason Smith |
| Email: | jasonsmithwa{at}yahoo.com.au |
| Where are you from: | Cape Town |
| Comments: | Great Website Lynn.I have just had my surgery done at Constantiaberg and am feeling so good.I think its amazing what you are doing. |
| October 22, 2008 09:33:06 (GMT Time) |
| Name: | Illinois Epilepsy Action Network |
| Email: | epilepsyillinois{at}gmail.com |
| Where are you from: | Illinois |
| Comments: | Hi there, We'd just like to introduce ourselves -we're the Illinois Epilepsy Action Network. We're working to unite and strengthen the voice of the epilepsy community in the state of Illinois and beyond. We're thrilled to meet you and thank you for this great site. Please feel free to drop us a line at any time on any of the following pages: Myspace page: http://www.myspace.com/epilepsyillinois Facebook: http://www.facebook.com/home.php#/pages/Illinois-Epilepsy-Action-Network/12884879809 or join other epilepsy advocates at our Web site: www.epilepsyillinois.org Thanks for your support, please keep in touch and best wishes! ILEAN |
| July 1, 2008 17:10:25 (GMT Time) |
| Name: | MADELEINE DIPPENAAR |
| Email: | madeleine.dippenaar{at}yahoo.com |
| Where are you from: | PRETORIA, SOUTH AFRICA |
| Comments: | VERY GOOD TO KNOW WE HAVE A WEBSITE LIKE THIS! I HAVE EPILEPSY FOR NEARLY 30 YEARS, AND WOULD LIKE TO OFFER MY SERVICES TO PEOPLE THAT ARE BATTELING TO ACCEPT THE FACT THAT THAY HAVE A MEDICAL PROBLEM!! You can live a 100% normal life with support! |
| June 26, 2008 12:30:30 (GMT Time) |
| Name: | Darlyn Caldon |
| Email: | dcaldon{at}sc.rr.com |
| Where are you from: | Columbia, South Carolina, U.S.A. |
| Comments: | I am looking for information. I just completed the pre-surgical evaluation tests in the hospital and don't know yet if I am a "good candidate" but I'm trying to learn all I can. |
| June 23, 2008 17:39:38 (GMT Time) |
| Name: | Carol Ireland |
| Email: | cireland{at}epilepsy.org.au |
| Where are you from: | Epilepsy Action, Australia |
| Comments: | This is excellent Lynn! Congratulations on your constant efforts and great results in assisting people living with epilepsy. Regards, Carol |
| June 22, 2008 23:47:05 (GMT Time) |
| Name: | Shawreen van Aarde |
| Email: | sqvanaarde{at}yahoo.co.uk |
| Where are you from: | Worthing,United Kingdom |
| Comments: | You really have done a great job and I am proud of you. |
| June 22, 2008 20:06:08 (GMT Time) |
| Name: | Angela McCarthy |
| Email: | |
| Where are you from: | Nova Scotia Canada |
| Comments: | Hey Lynn, Awesome job on the web site!!!!! |
| June 22, 2008 19:07:47 (GMT Time) |
| Name: | Lynn Jansen Van Rensburg |
| Email: | Lynn{at}gamdak.co.za |
| Where are you from: | King William's Townn |
| Comments: | I am so happy to start this website |
| June 19, 2008 17:07:07 (GMT Time) |