He knows my condition

[Boitumelo92]

He knows my condition but he called when it suited him.

I propose now. I'm putting my voice out.

i will not allow people to take me for granted im fighting for all epileptic human being in SA.

Hear me out...how can you not on weekends if you really know that people are struggling and being mistreated by the society!

Epilepsy SA every small town must have have a campaign.

Please hear us out and support us!

[EpilepsySA Partner]

Dear Boitumelo,

I find it sad that you are raising your disappointment with our staff not being available over weekends on a public forum as you have been informed that the matter is being addressed by the relevant Branch management.

Surely, you must understand that paid staff members cannot be expected to work 24 hours a day 365 days a year. They are human beings that deserve the same rights and considerations as all other workers in South Africa.

As an organisation Epilepsy South Africa must adhere to the same labour legislation as any other employer (including the working hours of staff).

You will recall that we responded to your social media posts outside of office hours. In addition, the staff member you are referring to has an excellent work ethic and has been employed by Epilepsy South Africa for many years. His work speaks for itself. I believe you need to have some consideration for him as well. Our staff work extremely hard.

We would be happy to include you in our awareness campaigns but we really urge you to reconsider the rather aggressive angle you've taken towards an organisation with the best intentions. We work extremely hard on a very small budget and welcome the support from all South Africans with and affected by epilepsy to raise awareness about this condition.

Maybe you should review our recent campaigns and ask not what the organisation is doing for you, but what you are doing for persons with epilepsy. We look forward to working closer with you in the future.

Sincerely

Marina Clarke

National Director

Epilepsy South Africa

[Boitumelo92 in reply to EpilepsySA]

I'm not being aggressive here i wanna be heard i mean one Saturday morning wont kill anyone its not like we gonna work the whole day...im only available on weekends coz i have a life also...but im willing to go all out and make this happen even if it means having sleepless nights...if that's wrong well sorry...I'm sorry if im aggressive and out of line but im gonna fight until im heard

[Boitumelo92 in reply to EpilepsySA]

for your point of view Marina i never knew there's an organisation until i decided to google epilepsySA and the organisation has done nothing for not ever in my life have i heard about Epilepsy SA until i googled. thank you

[EpilepsySA Partner in reply to Boitumelo92]

I'm so very pleased that you now know about our organisation. We are a relatively small organisation working extremely hard to spread information about epilepsy. As you are in Gauteng it might be nice for you to visit the Branch in Springs to get an idea of some of our work.

We also rely heavily on volunteers like yourself to spread the message as it carries such weight when a person with epilepsy tells their personal story and how they've dealt with their condition. Many of our talks about epilepsy are conducted at clinics where persons with epilepsy collect medication and receive treatment. This helps us to "find" people (as you suggested). We also work with epilepsy activists in communities to arrange talks and events at schools, churches, sports clubs, companies and any other place. If you are involved in any such places maybe you could help us to arrange an awareness talk?

Are you familiar with the World Health Organisation Epilepsy Resolution? We are currently applying for funding from IBE Africa (IBE is the International Bureau for Epilepsy) for an advocacy campaign for the implementation of this resolution in South Africa. If you don't have this resolution or can't access it, please email me at [e-mail] and I will send you a copy.

We also started a youth initiative (The Nicholas Project) recently to reach out to young people with epilepsy. Another new initiative is our Life Cycology project which is a group of cyclists with epilepsy raising awareness through cycling events. If you have a suggestion for other awareness events, we would be happy to talk to you about this.

However, I think it is really important for you to establish contact with our Gauteng Branch as this is your closest service point. I know that you would like to meet with them outside of office hours, but please remember that they are also employees with specific working hours. You also stated before that one Saturday won't kill them, but remember that you are not the only person asking to meet outside of office hours. We simply cannot accommodate all requests all the time. Maybe you can find a little time during working hours to meet with them. The team at the Branch are really committed and work extremely hard. Most of them have been with our organisation for many years and we are really proud of their work. Also remember that comments can easily be misinterpreted to come across as aggressive. We need to work together to really make a difference.

Regards

Marina

[Boitumelo92 in reply to EpilepsySA]

Do you how expensive it is for me to go to Springs? I only found out about Springs until now and yet its far for people at the Vaal do you know that?

[BoytjieD]

I was diagnosed with epilepsy at the age of 11, after neurologists could only explain that brain damage was caused when I was 3 years of age due to an incredible high fever in which I was rushed to A&E. Why it took so long to develop is still a concern to neurologists, but I turned 41 beginning of September & have not had ANY seizure since December last year. Cutting down on sugary foods & drinks(only Coke I drink is Coke Zero, & Oros Light), and walking through our security complex also improves my energy a lot. Not forgetting my 2 4 legged sons that are extremely protective over me, & keep me calm & relaxed at all times, especially if they sense that something is wrong with me. The daddy of the 2 Jack Russels suffers from epilepsy aswell.