In recognition of National Epilepsy Week (13-20 February 2024), the Neurological Association of South Africa (NASA) is dedicated to breaking the stigma surrounding epilepsy and creating an understanding of the condition affecting approximately 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.
Shockingly, 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, specialist neurologist and executive board member of NASA says epilepsy is a neurological condition characterised by brief, excessive electrical activity in the brain. This can happen to anyone at any age and nobody is immune to it.
"Epilepsy is a medical condition, in principle no different to high blood pressure, arthritis, migraine or asthma. Like migraines, it is episodic and occurs in the brain. Its duration is shorter than the common migraine and both are neurological conditions. Contrary to prevalent myths, epileptic seizures are not caused by a psychiatric disorder, demonic possession, ancestral displeasure, or hormonal dysfunction. The condition is not infectious nor contagious."
"Dealing with prejudice and discrimination, based on myths about the condition, is one of the greatest struggles for a person with epilepsy. This understandably often results in social withdrawal, rejection and social isolation. Children with the condition are often teased or bullied. Adults are unnecessarily and unfairly denied acceptance for work, especially when competing with others. Others are illegally dismissed or demoted once the condition becomes apparent. Unfair psychosocial disadvantage accumulates as the years pass."
Dr Butler says there are many causes for epileptic seizures. "Most often the causes are trivial and include tiny birthmarks in the brain or combinations of genes. These causes often do not affect intellect or neurological functioning in any other ways."
"Due to the relatively high incidence of motor vehicle accidents, brain injuries and brain infections, epilepsy may be more common in South Africa than in developed countries. Amongst the different causes for epilepsy, a small percentage relate to previous infections in the brain, such as HIV, tuberculosis and cysticercosis (tapeworm)."
He explains that seizures are the result of excessive electrical discharges in the brain, varying from a brief strange feeling or experience, a brief lapse of attention or muscle twitch, to more severe seizures, where people fall and shake. The frequency differs from person to person, with some having many seizures in a single day, to weekly, monthly or yearly whilst some have only a handful over many decades.
"Epilepsy is treatable and most people become seizure-free when they are adequately managed. Most types of epilepsy are easy to control with medication, usually a single medication. The anti-seizure medication is used as a preventative measure, reducing the excitability of the affected brain cells of the patient," Dr Butler says.
"For those whose seizures do not stop while using medication, surgery requires strong consideration. To prevent accumulating psychosocial disadvantage, this needs to be considered if seizures do not stop on medication within two years of onset."
Dr Butler says cannabis has been touted incorrectly in the media as a treatment for epilepsy. "While there is good scientific evidence that a pure extract of cannabis, known as cannabidiol, consistently used at precise doses every day is effective, no such evidence exists for cannabis consumed socially. Furthermore, cannabis that is consumed socially contains innumerable compounds that have not been studied in people with epilepsy and some of these compounds may be harmful for seizures."
While the risk of death during a seizure is small, seeking medical treatment and adhering to prescribed medication is crucial for preventing such outcomes.
"Yearly 1 in 1100 adults and 1 in 4500 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."
Dr Butler emphasises that people often mistakenly think that epileptic seizures are a sign of intellectual impairment, which is certainly 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."
For more information or to seek help visit your General Health Practitioner, or nearest Clinic, or consult www.epilepsy.org.za online.