It's about time

[Boitumelo92]

I'm here not to cause conflict but to make a difference...i'm here for all epileptic patient... guess what i was diagnosed with epilepsy and im still fighting it...if it means i sound aggressive and fighting yes i am for everyone with my condition or shall i experience stroke before im heard vele how many burnt marks must i get to show so that ill be heard? Dear EpilepsySA hear me out people are misinformed out there they say we are demons and we must see sangoma's for we owe ancestors but need to be informed every small town in south africa must have a campaign...

[EpilepsySA Partner]

Thank you for your feedback. We agree that the message must be spread and that is why we are running a series of information and awareness campaigns. For example, we are currently running a Facebook campaign focused on the United Nations Convention on the Rights of Persons with Disabilities. Our next campaign will run during the second half of October 2018 focused on SUDEP (Sudden Unexpected Death in Epilepsy).

We have five main events on our calendar annually:

1. International Epilepsy Day celebrated on the second Monday in February which is followed by National Epilepsy Week. The 2019 theme is "This is Me" to draw attention to the fact that persons with epilepsy are like every other person in society.

2. Human Right Day in March focusing on the rights of persons with epilepsy.

3. Mandela Day in July focusing on the concept of Ubuntu. We are proud that this gives us an opportunity to "give back to others" rather than being recipients. For example, we helped out a shelter in Cape Town this year.

4. SUDEP Awareness day on 23 October. This is one of the most difficult topics to tackle as most people try to avoid it.

5. International Day of Persons with Disabilities (IDPD) on 3 December linked to Disability Rights Awareness Month (DRAM) from 3 November to 3 December.

If you want to be an effective campaigner for the rights of persons with epilepsy it is important that you equip yourself with knowledge beyond your own experience. For example, the term "epileptic" or "epileptic patient" gives the impression that you are somehow ill. Epilepsy South Africa (as is the case internationally) uses the term "person with epilepsy" as this indicates that you are first and foremost a person who happens to have epilepsy. "Epileptic" or "epileptic patient" is firmly rooted in the medical model of disability as opposed to the social model. The medical model believes that a person with a disability is somehow ill and must be "fixed" while the social model believes that the disability lies in the inability of society to accommodate diversity such as persons with epilepsy.

We have an electronic library available as well as a awareness information which we would be happy to share with you (free of charge). Simply visit our website (epilepsy.org.za) and click on the "epilepsy information" tab where you will find a wide variety of awareness material. You are welcome to download and use this. If you would like to access information from our electronic library, please email [e-mail] stating the topic you would like information about.

Looking forward to accompanying you on this journey.

[Boitumelo92 in reply to EpilepsySA]

If you would would do this to every small town i wouldn't have a problem.. tell you what not everyone who is epileptic has internet access and not to mention they all cant afford smart phones....you only do the events where? come and reach us find us...i guess that's what you're here for...and you replying here not making an appointment with me to make this work....i guess we wasting a whole lot of time... tick tock we don't have the whole day

[EpilepsySA Partner in reply to Boitumelo92]

Firstly, I am not able to meet with you in person as I am based in Cape Town. Secondly, we have opted for social media campaigns as a cost-effective way of reaching the most people we are able to. South Africa is a country with one of the highest percentage of cellphone users.

It is important to understand that our National Office receives no funding from Government for our work and must thus raise every cent spent ourselves - a really difficult task. To thus find people with epilepsy in every small town is financially impossible.

We look forward to your practical proposals on making a difference in your own area. This is what being an epilepsy activist is all about.

[Boitumelo92 in reply to EpilepsySA]

what about the office in Joburg? or anywhere in Gauteng? Theres so many ways to do this i think you being based at Capetown its easy that why so many things are being done there...and we all dont afford coming to Cape Town...im not here for petty stories why are you only targeting government? do you even know how is it hard to get a job just because we are epileptic?

[Boitumelo92 in reply to Boitumelo92]

we are being limited and judged but they dont know how we graduated and finished our matrics

[Boitumelo92 in reply to EpilepsySA]

mind you not everyone in SA especially rural areas they don't have cell phones..and not everyone here in a SA has a cell phone...not everyone that is epileptic has a cell phone i promise you not everyone