Understanding epilepsy

Bishop Xhanti is a traditional healer who has a practice in Philippi. He said, “When a person has a seizure in Xhosa culture it’s believed that the person may have had eye contact with the snake of ukuthwala [in this case, the use of black magic to get rich]. This usually happens to people above the age of 10 years.”

Xhanti said some people use traditional herbs and syrups to boost their luck and fortune, but there are people that are allergic to such herbs and react with a seizure. He said this is common in children under the age of two. Xhanti said a combination of natural herbs and syrup can treat this condition.

Xhanti believes epilepsy is curable with use of a forest tortoise called skolpati (Manouria emys). He said they use certain parts of the tortoise mixed with natural herbs and it’s guaranteed that when someone is treated with that kind of medicine they would never experience a seizure again.

Epilepsy as a neurological condition that affects the nervous system. It is also known as a ‘seizure disorder.’ Epilepsy is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition.

In an epileptic seizure, the normal activity within the brain is disturbed and causes random signals. This can last for a few seconds or several minutes.

Ede Tyopo, 31, said he was diagnosed with epilepsy at the age of 25, but was 21 when he had a seizure for the first time. Tyopo said, “Because of the way things are done in my [Xhosa] culture, being taken to hospital was not the first option. I did not know anything about epilepsy before I was medically diagnosed, but I had childhood memories of school kids that were falling due to seizures when I was in primary school. We thought they were being bewitched.”

27-year-old Dinileminyanya Latha said he grew up with the condition from a very young age, but was only medically diagnosed as epileptic at the age of 14. “I cannot recall the time as I was very young and I didn’t know that this was epilepsy. I was quite confused about my condition. My family, and some people around me, suspected that I was bewitched; others believed that the seizures were due to ancestral spirits; they believed that I was chosen by my ancestors to be a traditional doctor. There are beliefs in our culture that people with epilepsy have special powers and are intelligent,” said Latha.

Neurologist Dr Percy Kumire says, the diagnosis of epilepsy is mainly clinical. “The healthcare worker has to take a very detailed history from the patient and family or colleagues,” said Kumire. “If the doctor is not sure, he can request an EEG (electroencephalogram) which helps give a definitive diagnosis. A brain scan is also frequently requested to rule out any potential brain disease. In short, a doctor can make the diagnosis of epilepsy following a single visit to the hospital depending on the patient’s history.”

According to Epilepsy South Africa, a tonic-clonic seizure involves staring, stiffening body, possible blue color around the mouth and jerking movements. Contrary to popular belief, when it occurs one should not put anything in the mouth.

That is contrary to what is understood in Xhosa culture because it recommends that a shoe must be pushed into the mouth of a person when a seizure occurs. “In my culture epilepsy is believed to be contagious and something should be put in the mouth when a person is experiencing the seizure,” said Latha.

Dr Kumire said, “There is some delay in bringing the patient to hospital in Xhosa communities from onset, because epilepsy is associated with evil spirits and patients may visit the traditional healers first before coming to the hospital. However, ultimately, most patients come to the hospital before major complications occur.”

Epilepsy is definitely not contagious.

A social worker at Epilepsy SA, Ndileka Mandaba, said in some communities people believe that there is no need to take epilepsy medication because it does not cure but stabilises it.

“[Some people] believe a traditional healer will cure their epilepsy condition … [They] usually come back to us for our services, and they listen to us because they are by then desperate for help and have uncontrollable seizures. They usually explore other possible solutions to cure epilepsy, because they cannot accept that they will have this lifelong condition.”

Mandaba said that during their workshops they try not to dispute people’s beliefs, instead they give them facts about what they know about epilepsy.

She said they also try to engage with the registered traditional healers where they share information, experiences and understanding on epilepsy. This is mainly because some people use both scientific and traditional medication and they can clash and causes side effects.

Dr Kumire said a major problem patients face is stigma. He said they are sidelined in the job market and do not fully participate in community activities.

Having epilepsy can be disrupting and some patients stop going to school or college, because they fear they might have a seizure in class.

“Epilepsy has huge implications for a patient’s future job prospects. In the same vein, some medications used to treat epilepsy may have side effects which make the patient unable to concentrate or ‘think fast’, which can then be interpreted as mental retardation. As doctors, if such a side effect is reported, we usually change the medication,” said Dr Kumire.

Mandaba said not taking medication but focusing only on traditional help can be dangerous; some people end up with intellectual disabilities.

Neuropsychologist Dr Jackie Bean said the epilepsy effects on social life varies from negligible to significant. The most commonly reported effect is lowered self-esteem, which affects the way one relates to people.

Latha described the negative impact of the condition on his social life. He said, “I struggled with my studies as I usually get seizures at awkward times, especially when there are big crowds, for example at a university campus. It has also affected the few romantic relationships I have had due to the misunderstanding that my girlfriends had about the condition.”

He travels a lot because of the field he is in, but people don’t like to travel with him, he said.

Tyopo also experienced problems with his social life at first, due to his paranoia and fear of the bad things people would say about him. He said, “I gave myself time to learn more about epilepsy and I realised that having the attitude to understand your epilepsy helps a lot. Sharing and talking about it with family and friends definitely gives one the strength to cope.

“I am taking medication — currently three different types. In my own understanding it is all about the attitude, because in my case I do know some of the things that trigger my seizures, so I try my best to prevent them and take my pills all the time.”

Mandaba said, it’s not so difficult to help young black people, because they believe in “Western” medication, but there is still a problem with the older people and parents. They often impose their methods on children that are still dependent on them. She said the problem is not only traditional beliefs, but there are a lot of other beliefs among old people. Some are Christian and only believe in prayer. They regard epileptic seizures as the work of demons or evil spirits.

Dr Kumire said most patients understand when the condition is explained to them and they are compliant with taking their medication and going to the clinic for follow ups.

But Latha disagrees. He has decided to stop taking his medication, due to his belief that it was not helping him at all.

“I have taken a decision not to take medication anymore this year as I felt that it is not helping. Besides my dislike of medicines, I did not like the side effects — drowsiness and nightmares — and having to routinely take pills every day. The frequency of my seizures has not changed since I have stopped taking the medication.

“I just have to avoid certain situations that are likely to trigger the seizures. For example, flashing lights, too much caffeine, extremely hot temperatures, hunger, extreme emotions (including happiness), strong odors … Some people are quite judgemental and sometimes treat me like a child, which irritates me.”

Dr Kumire said treatment for epilepsy is easily accessible at public health institutions. He said, on average, most patients are given treatment at their nearest hospitals. However, cases when a patient is not responding to treatment or the primary health care provider is unsure, are referred to tertiary health institutions for specialist management and further investigations.