Myths and dreams: The realities of epilepsy in rural South Africa
“I usually don’t know when the seizures will start or end – they just happen unexpectedly,” he tells OurHealth. “I’ll wake up not knowing what happened until my family or friends tell me.”
“Sometimes I wake up with an injury,” says the teenager, who adds that when seizures strike at school, his school will call his mother or his friends will help take him.
Lusanda was diagnosed with epilepsy four years ago. Epilepsy is a neurological disorder that can cause – for instance – seizures, abnormal sensations and loss of consciousness.
According to Epilepsy South Africa, about one in every 100 people have epilepsy. In about 80 percent of patients, epilepsy medication will control their symptoms.
According to the US non-profit Mayo Clinic, epilepsy has no identifiable cause in about half of all patients. In the other 50 percent of patients, it may be traced to various factors including genetics, as well as head or prenatal trauma.
A leading cause of acquired epilepsy in sub-Saharan Africa is attributable to tape worms found in pork, according to the World Health Organisation (WHO). Once infected meat is eaten, tapeworm eggs grow into adult worms that continue laying eggs, which can travel through a person’s body. When these eggs travel to the brain, they can cause epilepsy however epilepsy itself is not contagious. The WHO has advised people to cook pork thoroughly to avoid tapeworms.
While friends, family and teachers support him, Lusanda says many in his rural community of Amsterdam do not understand his condition.
“Living with epilepsy at this age is a challenge because a few people may accept you, but the rest will discriminate against you,” Lusanda tells OurHealth. “I don’t have many friends…some kids doesn’t even want to play with me because they believe can (catch) epilepsy.”
Lusanda’s mother, Duduzile, says misconceptions about epilepsy are not confined to children.
“Living in a rural community where people still believe in culture and traditional medicine, it’s a challenge,” says Lusanda’s mother, Duduzile. “I remember when my son started having the seizures, some of my closed family suggested traditional medicine but my husband and I refused.”
Amsterdam resident Desmond Madonsela says he believes traditional medicines can cure the condition as long as the patient has not been burned before. He also reported mistakenly believing that the condition was contagious.
From myths to dreams
With medication, Lusanda has been able to largely control his symptoms and Duduzile says she is happy to see him running and playing like any other boy.
“Taking treatment everyday, it’s help to control and (reduce) the chances of having seizures,” says Lusanda, who wants to grow up and become a doctor one day. “That’s why if sometimes I don’t have treatment, my mother usually doesn’t allow me to attend school.”
He adds that can see when his mother is worried about him. The Ngwenyas have recently struggled to get Lusanda’s medication at their local clinic.
“The different between me and my friends is that they can play as much as they want, but – because of my disease – sometimes I am not allowed to play,” he adds. “I may be young but I can see in my mother’s eyes that she worried about my health.”
Professional nurse Ntombi Mashaba says it is important that patients like Lusanda stay on treatment to reduce seizures and she encourages families to get involved in treatment.
“Families with siblings who are living with epilepsy need to know and understand that the patient may have difficulties to concentrate,” she tells OurHealth. “That’s why some young, chronic patients keep failing and repeating the same standard.”
If patients are taking both traditional and Western medicine, they are encouraged to tell their health worker about this.
Duduzile added that health care workers also ask her to keep a record of Lusanda’s seizures including the date, time and the side of his body that was affected.