Epilepsy Support and Advice

[Tdevilliers]

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.

[stellan]

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.

[Tdevilliers in reply to stellan]

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.

[stellan in reply to Tdevilliers]

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

[Lebo1757]

I love your story. My daughter was recently diagnosed at age 10. Still trying to understand and support

[Motivated_mother in reply to Lebo1757]

Lebo. Ask as many questions as you can and also read up.

If you ever need to chat, do not hesitate to contact me. I hope you have support during this time and not a single mom like I was.

All the best.

Chantal

[Lebo1757 in reply to Motivated_mother]

Hi Chantal

Thanks for your reply. My concern is the seizures she gets one every week.

[Motivated_mother]

Thank you for your message.

I am happy to hear your positive feedback, good for you!

Rachelle case is a tad different as she has obtained brain trauma through the Epilepsy and has learning difficulties now, she is turning 18 and is doing grade 4/5 work.

Reality is she will not be able to live an independent life for many years to come.

As a single mother with no support its been a struggle, but she is the reason I am still going.

All the best to you and your family.

Best Wishes,

Chantal

[Lebo1757 in reply to Motivated_mother]

Hi Chantal. I know your pain I can only imagine. Only God can heal our pain. Stay Strong for your child.