Three years ago, Tembeni Mame started waking up in a hospital bed without any idea how he got there.
It turned out he was getting seizures in his sleep, sometimes up to 10 a night.
Doctors ran some tests, including a CT scan, but they found nothing wrong with his brain. Nevertheless, they decided to put him on anti-epileptic drugs to stop the seizures.
By July last year, his condition had improved. He came off the drugs and has remained seizure-free since.
Mr Mame was in his mid-40s when his seizures started, and his experience with epilepsy is indicative of just how suddenly someone can be diagnosed with it.
It’s this “first-time” experience that is the theme of this year’s International Epilepsy Day on Monday February 13, underscoring how anyone can be diagnosed with epilepsy at any time. February is also Epilepsy Awareness Month, and National Epilepsy Week is from Monday February 13 to Sunday February 19.
In September last year, Mr Mame, 48, started volunteering at Epilepsy SA , in Lansdowne. There, the Khayelitsha resident helps with workshops and expos. He also attends training sessions on how to cope with the disorder while, at the same time, creating awareness in his community through both his church group and Facebook page.
His word carries a lot of weight because epilepsy is not the only chronic condition he’s managed successfully: Mr Mame was diagnosed with HIV in 1996, when there was a lot more stigma attached to a condition considered a virtual death sentence at the time. He recently celebrated 21 years of living a healthy, fruitful life with HIV.
Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
However, just like HIV, epilepsy also has its problems with stigma and ignorance and Natasha Daniels, social development manager at Epilepsy SA, says that’s why it’s important to create awareness about it.
“People still don’t know if it’s a medical condition, and they still don’t know about us and the services we offer. They don’t have to feel alone: we are here for them and offer counselling and training for them,” she said.
Mr Mame says he really enjoys educating people about epilepsy, as many still believe in the myths surrounding the brain disorder.
“My message to epilepsy patients is this is not about other people, this is about you. It will not just go away, so educate yourself; don’t hide away. People need to be equipped with the correct information,” he said.
He advises those with the condition to stay out of harsh sunlight, because it can trigger a seizure, and change their lifestyle, which also means not drinking so much alcoho. His next project will deal with male rape – something that is seldom spoken about, he says, making it even harder for victims of this crime to report it.
“There are a lot of young boys who get raped, especially in the townships, and they are afraid of reporting it because people say you are not man enough if you can get raped. This is what leads to men having psychological issues as adults,” said Mr Mame.
Epilepsy SA will run awareness programmes during National Epilepsy Week. On Tuesday, they will be in Wellington, on Wednesday at Vanguard Mall, on Thursday in Promenade Mall in Mitchell’s Plain and on Friday in Langa. For details call 021 703 9420.