In recognition of National Epilepsy Week (February 13 – 20), the Neurological Association of South Africa (Nasa) is dedicated to breaking the stigma around epilepsy and creating an understanding of the condition affecting about 1 in 100 South Africans.
About 1 in 26 South Africans will develop epilepsy and 1 in 10 will experience an epileptic seizure during their lifetime.
Much of their suffering is not inflicted by the condition, but rather by the perceptions of those who have not had epileptic seizures.
This unnecessary stigmatisation is rooted in profound, widespread ignorance about the condition and the harm caused is incalculable.
Dr James Butler, a specialist neurologist and executive board member of Nasa, sheds light on epilepsy, a neurological condition characterised by brief, excessive electrical activity in the brain.
According to Butler, epilepsy can occur in people of all ages and is not selective.
“Epilepsy is a medical condition, similar in principle to high blood pressure, arthritis, migraine, or asthma. Like migraines, it has episodic occurrences and affects the brain. Although its duration is shorter than a common migraine, both are neurological conditions.
“It’s important to debunk prevalent myths about epileptic seizures – they are not caused by psychiatric disorders, demonic possession, ancestral displeasure, or hormonal dysfunction. The condition is neither infectious nor contagious.”
Butler also addressed the challenges individuals with epilepsy face due to societal misperceptions.
He said: “Dealing with prejudice and discrimination, based on myths about the condition, is one of the greatest struggles for a person with epilepsy.
“This often leads to social withdrawal, rejection, and isolation. Children with epilepsy are frequently subjected to teasing or bullying, and adults face unjust barriers to employment opportunities, sometimes experiencing unlawful dismissal or demotion once their condition is known.”
Addressing the causes of epileptic seizures, Butler said: “Many seizures are caused by trivial factors, such as minuscule birthmarks in the brain or combinations of genes. These causes typically do not impact intellectual abilities or neurological functioning in other ways.”
Butler said epilepsy may be more prevalent in South Africa than in developed countries due to a higher occurrence of motor vehicle accidents, brain injuries, and brain infections.
He said: “Among the various causes of epilepsy, a small proportion is associated with prior infections in the brain, such as HIV, tuberculosis, and cysticercosis (tapeworm).”
Butler said seizures result from excessive electrical discharges in the brain, ranging from brief unusual sensations or experiences, momentary lapses of attention, or muscle twitches, to more severe episodes where individuals fall and experience convulsions.
The frequency of seizures varies widely, with some people experiencing numerous seizures in a day, while others have them on a weekly, monthly, or yearly basis. Some individuals may only have a few seizures over several decades.
He said epilepsy is a treatable condition: “Most individuals become seizure-free when properly managed. Many forms of epilepsy can be easily controlled with medication, often requiring just a single medication.
“The anti-seizure medication acts as a preventive measure, reducing the excitability of the affected brain cells.”
For those for whom medication fails to stop the seizures, Butler stressed the importance of considering surgery to avoid the accumulation of psychosocial disadvantages.
He noted that if seizures persist despite medication within two years of onset, surgery should be considered.
Discussing the use of cannabis as a treatment for epilepsy, Butler cautioned against the misconception perpetuated by the media.
He said: “While there is solid scientific evidence that a pure extract of cannabis, known as cannabidiol, used consistently at precise daily doses, is effective, there is no such evidence for recreational cannabis use.
“Additionally, recreational cannabis contains numerous compounds that have not been studied in people with epilepsy, some of which may be detrimental for seizures.”
While the risk of death during a seizure is minimal, seeking medical treatment and adhering to prescribed medication is crucial for preventing such outcomes.
“Yearly 1 in 1 100 adults and 1 in 4 500 children with epilepsy will die during a seizure. This is usually due to cessation of the control of breathing within the brain, occurring just after the end of the seizure.
“The goal of medical management is to restore individuals to their previous level of functioning, allowing them to contribute as productive members of their family and society.”
Butler pointed out that people often mistakenly think that epileptic seizures are a sign of intellectual impairment, which is not the case.
“The majority do not have an intellectual disability. People with intellectual impairment are at increased risk of epileptic seizures, but they must also be treated on merit.
“They are no less loved by their family members and they too should not be discriminated against.”