For Ede Tyopo from Bizana, being epileptic hasn’t changed his character. He is still that hard-working, reliable, and a people’s person he was before he was diagnosed with epilepsy.“I am flexible to any changes and comfortable in adjusting to any situation. And I always try to be optimistic at all times,” he says.

“Epilepsy is a medical condition that can be caused by a variety of things for instance head injuries, alcohol abuse amongst other things. It is an invisible disability. You can’t tell if a person is epileptic unless they have a seizure,” he explains. Ede says there are different types of seizures, the most common of them is a central nervous system (neurological) disorder in which brain activity becomes abnormal, making some people even repeatedly twitch their arms or legs.“I was not born with this condition; I had my first seizure at the age of 21. I woke up one morning and realised
I had bruises all over my body and I could feel that there was something wrong with my tongue. After showing my mother the state that I was in, she asked my brother who was sleeping in the same room with me that night if he saw anything. He told us the news that would change my life forever. My mother being a concerned parent that she is, wanted us to go to the hospital immediately, but I refused with the hope that it would never happen again,” Ede recalls.
Unfortunately, Ede says it happened again, and again and again. Out of sheer desperation, Ede’s parents suggested that they all go to a traditional healer but unfortunately that didn’t help.“During this whole period, I found myself struggling with memory.ended up not completing my electrical engineering course that I was pursuing.

Fortunately, in 2007 I was employed by the Department of Health at Frere Hospital, where I am currently employed to this day. In the same year I consulted a doctor at Frere Hospital who suggested that I do a CT scan then the results confirmed that I was epileptic,” he says.

You are likely to feel rather stunned and confused when first told that you have epilepsy. People are often advised not continue exercising if they feel weak, nauseous, or dehydrated.“I was advised to make a lot of changes in my life. At the time I was very active playing rugby, so I was told to stop playing.

After a couple of years, I decided to start road running which was also going to be a problem for me because of the weather conditions. But I told myself that I would not let my condition keep me from doing this,” he recalls.

“I’ve done a number of marathons and ultra-marathons which includes, three Two Oceans Marathons and four Comrades Marathons. I have decided to live my life and set a good example to every person living with this condition to see that there is nothing we can’t do,” he continues.
He says he feels there’s a lot that can be done to educate people about epilepsy. A challenge faced by people living with epilepsy is that there are few neurologists. There are only three medical specialists for every 100,000 people in the Eastern Cape. This was revealed by health MEC Helen Sauls-August at the Bhisho Legislature in 2018. “Your disability must not stop you from achieving your goals and reaching your dreams. Always stay positive,” he says.
“Life is not easy when you’re a person with Epilepsy because you never know when it will attack you. I must say that the day I started taking medication, I started getting less seizures. But for me accepting the condition and talking about it a lot has really helped,” he adds.

“I always try to inform the community about this disability. I always tell them that before a disability, there is a person. It is the environment that makes people disabled. If a person with a disability is provided with all the necessary devices needed, then they will live a normal life just like anyone else,” he says.

Ede passed his Electrical Engineering course, and he is currently working towards getting a trade certificate number. “I also studied Public Administration but could not go up to N3,” he reveals.Ede reveals that he unwinds by listening to a variety of music genres but right now he is enjoying SA hip hop and Afro Soul.

Epilepsy South Africa is currently conducting a series of surveys to understand the impact of epilepsy on the lives of people. The surveys have revealed that it affects one in every 100 people in South Africa, i.e. approximately half a million South Africans.

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