Nearly half a million South Africans suffer from epilepsy, and according to non-profit organisation Epilepsy South Africa, it affects a further two million people close to those who suffer from this disease. But despite the fact that up to 80% of suffers are able to control the seizures associated with epilepsy with medication, those living with the disease still face constant physical, emotional and psychological challenges every day.
'How epilepsy limited my childhood’
Thembakazi Babana, 35, from Mdantsane in the Eastern Cape is a board member of Epilepsy SA and their representative on the Presidential Working Group on Disability. She had her first epileptic seizure when she was a toddler and, because of a lack of knowledge about the disease, her family denied her the joys that other children could enjoy growing up.
“When I was growing up, I was never told that I was epileptic. All I knew was that I wasn’t allowed to play with other kids, while my other siblings could go anywhere,” relates Thembakazi.
The emotional challenges and stigma of epilepsy
One of the greatest struggles for epileptics is the stigma that exists around the disease – this stigma is especially prevalent in in poor rural communities, says Thembakazi. “Most people in my community believe you’re bewitched or have demons if you’re epileptic, and that it’s contagious,” she says.
This makes it difficult, if not impossible for sufferers to get the proper care. Additionally, the isolation that goes hand-in-hand with the stigma prevents those who suffer from the disease getting the emotional and psychological support that is so sorely needed, particularly at a young age. As a consequence, many epileptics suffer from depression, or other psychological issues.
This is exactly what happened to Thembakazi who suffered from mental health issues and had to be admitted to St Marks Psychiatric Clinic in East London in 2012 to get the help she desperately needed after fighting the disease alone for so long.
Managing epilepsy
As a child, Thembakazi was taken to a nyanga, a traditional herbalist, by her parents who didn’t know what was happening to their child. There she was subjected to what she terms “painful rituals” which just lead to more stress and seizures. Thankfully when she finally got the medical care she needed and was diagnosed as an epileptic, she was put on a drug called phenobarbital, a barbiturate and anticonvulsant used for treating epilepsy. This was later changed to a drug called Epilim (sodium valproate), which prevents her specific kinds of seizures.
The vast majority of epilepsy sufferers are able to control their seizures with medication. However, as everyone is different physiologically, patients need to be monitored closely by health practitioners in order to ensure the correct treatment is maintained.
While the medication has enabled Thembakazi to better control her seizures, she still has to deal with the daily stress and anxiety that comes with living with such an unpredictable, misunderstood disease. She finds that exercising regularly and turning to the help available in support groups has made dealing with the burden of the disease that much more manageable.
What to do if you have epilepsy
When asked what her most important advice is to those suffering from epilepsy, Thembakazi has the following wisdom to impart: “Educate yourself about epilepsy. Take care of yourself and please take your medicine as prescribed by your doctor. Don’t be too ashamed to ask for support and find the support you need – Epilepsy South Africa has branches all around the country. Just phone or email us.”
She has special advice for the parents of children with epilepsy: “Support your children and don’t go to nyangas and expose them to their painful rituals, because these people just add more stress to the epilepsy patient which can result in more seizures.”
How to contact Epilepsy South Africa
Contact Epilepsy South Africa for more information on epilepsy, as well as a support group near you. Visit their website, email [email protected] or call 0860 EPILEPSY (374537).
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