Epilepsy Week 2026: What every South African should know
- 3 days ago
- 3 min read
Epilepsy is one of the most common neurological disorders worldwide, affecting around 50 million people, yet in South Africa it remains underdiagnosed, misunderstood and severely stigmatised.
The Neurological Association of South Africa (NASA) says up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated, however in South Africa, while the Constitution addresses health rights, there is no specific mention of epilepsy or neurological disorders, reflecting the ongoing need for recognition, treatment access and public education.
Specialist neurologist and NASA President, Dr Patty Francis, says, epilepsy affects individuals of all ages and increases the risk of premature death up to three times compared with the general population.
“The overall risk of a child having unprovoked seizures is between 1% and 2%, rising to approximately 6% if a parent has epilepsy. Up to 80% of people with epilepsy can control their seizures with medication. The goal of medical management is to restore individuals to their previous level of functioning, allowing them to continue as productive members of society.”
Dr Francis says contrary to common myths, epileptic seizures are not indicative of intellectual impairment and are not caused by psychiatric disorders, demonic possession, ancestral displeasure or infection.
“Dealing with prejudice and discrimination, based on myths about the condition, is one of the greatest struggles for a person with epilepsy,” says Dr Francis. “Children are often teased or bullied, adults may be unfairly denied employment opportunities, and some are illegally dismissed or demoted once their condition becomes known. The psychosocial harm that results is profound and accumulates over a lifetime.”
Dr Francis explains that epilepsy is a neurological condition caused by brief, excessive electrical activity in the brain, which can affect anyone at any age.
“Epilepsy is a neurological medical condition, no different in principle from high blood pressure or asthma. Causes can range from genetic factors and small brain birthmarks to head injuries, strokes, infections (including HIV, tuberculosis and tapeworm-related cysticercosis) or brain tumors. In approximately two-thirds of cases, the underlying cause is unknown.”
“Seizures vary widely in type and frequency. Some individuals experience many seizures per day, while others may have one a year. They can range from brief lapses in attention or muscle twitching to generalised tonic-clonic seizures, where the person falls, stiffens and shakes.”
“Epilepsy is treatable,” Dr Francis emphasises. “Most people become seizure-free when managed properly. Anti-seizure medications reduce the excitability of affected brain cells and most patients only require a single medication. For those whose seizures persist despite medication, surgery should be considered within two years of onset to prevent lifelong psychosocial disadvantage.”
Types of seizures and what you should do
· Generalised absence seizures. The person looks blank and stares with blinking or slight twitching. It lasts a few seconds before normal activity continues.
What should you do? Reassure the person who may be unaware of the seizure. Note that a seizure occurred and what happened, including the duration.
· Generalised tonic clonic (known as grand mal). The seizure commonly starts with the person becoming rigid, falling to the ground and shaking with jerking movements. They might bite their tongue.
What should you do? It is not necessary to do anything more than ensure that they do not unnecessarily injure themselves during the seizure. Inserting any object or a finger into their mouth during such a seizure may break their teeth and will not benefit them in any way. If such a major seizure continues for more than five minutes, an ambulance should be called or they should be taken to the nearest medical facility or general practitioner to stop the seizure as soon as possible.
Safety for those living with epilepsy
- Never be too close to open fire. Place guards around fireplaces, primus or gas stoves.
- Leave the bathroom door (which should ideally open outwards) unlocked. It is generally safer to shower than bathe - if a shower is unavailable, keep bath water shallow and turn the taps off before getting into the bath. Avoid bathing while alone at home (if possible).
- Some people have seizures during their sleep (nocturnal seizures) and are advised to sleep without a pillow.
- Always wear a helmet when horse riding or cycling.
- Swimming, mountain or rock climbing and sailing should not be done alone.
- Companions should be informed of the condition and know what to do if a seizure occurs.
- It is also a good idea to wear a MedicAlert disc identifying you as a person with epilepsy. These are available from Medic Alert (www.medicalert.co.za)
For more information on epilepsy or to join a support group near you, visit Epilepsy South Africa
