Epilepsy South Africa

Epilepsy Support and Advice

I am a person, 56 years old, and have had Epilepsy since the age of 12. My condition is well controlled. Mainly, in my teens to mid-twenties I have experienced discrimination, low self esteem, lack of confidence in myself, etc. In my mid-twenties, I started a Social Support Group for people with Epilepsy, Epicare Cape Town. The interaction with others, support and growth of this group changed my life and I realised that I was not alone. The negativity energies in my life were transformed into positive energies in learning about the condition, myself, helping others through experience and knowledge gained. With a very positive outlook on life, and by now an outgoing attitude, I realised that the barriers of epilepsy were easy to cross, which lowered subconscious stress, and I believe resulted in the reduced seizure frequencies.

I studied civil engineering at age of 30 and my life has grown in leaps and bounds since. I am a keen Cyclist (30 Argus Tours) and Mountain Biker, and for a period, I did Long Distance Swimming events.

I have been involved with Epilepsy South Africa for many years and have been National Vice Chairperson for a number of years. Unfortunately, after 26 years running Epicare, with my increase work responsibilities and married life, I just did not have the capacity to continue organising and running a support group. Unfortunately, with nobody dedicated enough to take it over, I closed the group. This incidentally, was also at a time, when many other attractions and transport issues resulted in lower attendances. However, there are Epilepsy Facebook Groups that create a suitable platform to fill this gap and meet people on.

I am passionate about advising people with Epilepsy, mostly through experience, and will advise where possible.

3 Replies
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Hi, I am also a 50years Epileptic woman. I am worried about epileptic people from the rural areas. I need someone to help me start the epileptic group from those areas.

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Hi - I am not sure which area you are from - please advise?

The local Branch of Epilepsy SA can assist. If there is not one near you and you are in a rural town, then just advertise a meeting place where people can get together at a certain time, even if it is in a town square, coffee shop, garden and just start talking to one another and sharing your experiences. This is how things start and you will soon identify what people want from this and grow from there. You can gather and share information, etc as you go along.

Please don't refer to yourself as Epileptic - it is a label and has negative connotations, in other words it insinuates epilepsy is bigger than you. The correct term is that you are a person with epilepsy; in other words, you are an individual, who lives with a epilepsy condition.

Epilepsy is not a disease but only a condition, which is controllable by you, through self management, lifestyle and medication.

I can share more as we go along.

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I am sorry for that, I am in Pretoria by work but my home is Buhlebesizwe village in Mpumalanga.

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