Home Events Busting epilepsy stigma with knowledge

Busting epilepsy stigma with knowledge

by Tania Griffin
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Epilepsy is one of the most common long-term neurological conditions in the world, yet it remains largely misunderstood by many. For people with this often-invisible burden, the stigma surrounding epilepsy can significantly exacerbate the challenges they already face. 

Netcare and Epilepsy South Africa are teaming up this Epilepsy Week, from 12 to 18 February 2024, to highlight the condition and #StampOutStigma with public awareness, and clinical best practices in epilepsy and seizure management among healthcare professionals.

“No one should be afraid to discuss necessary aspects of their health with family and employers, but tragically, the stigma surrounding epilepsy leaves too many people facing this medical condition alone,” says Mande Toubkin, Netcare’s general manager of Trauma, Transplant and Corporate Social Investment.

Epilepsy affects one in every 100 people in South Africa, representing approximately half a million South Africans based on a total estimated population of 52 million.

“Untreated or inadequately managed, epilepsy can lead to brain injuries or other consequences requiring emergency treatment, and we are grateful to be partnering with Epilepsy SA to amplify awareness,” says Toubkin.

“We also need the public, young and old, to be aware that any seizure lasting more than three minutes should be regarded as a medical emergency, whether the person has epilepsy or not – it needs urgent medical assessment and treatment.”

Dr Vanmala Naidoo, a neurologist who practises at the Netcare Mulbarton Hospital Epilepsy Monitoring Unit, adds: “Some of the misperceptions are potentially very harmful, and we all have a responsibility to be better informed and more compassionate when it comes to epilepsy.

“Ignorance about epilepsy not only fuels the threat of social stigma, but it also means fewer epileptics are correctly diagnosed and treated, allowing them to be empowered to live optimally with their condition.

“Seizures do not always present as noticeable fits or convulsions; in some cases, the person may simply dissociate for a few seconds and carry on with their conversation or activities without knowing anything happened,” she says. 

A seizure is defined as an abnormal surge in the brain’s electrical impulses, causing a number of possible symptoms depending on which area of the brain is affected. 

“Not all seizures are necessarily epileptic, and the best way for doctors to understand what is going on and how to treat the person is through careful close observation in a multidisciplinary dedicated epilepsy monitoring unit,” says Naidoo.

An electroencephalogram records the electrical impulses in the person’s brain, during wakefulness and sleep, to identify how often the person has seizures, even those types of seizures that may otherwise be difficult to notice. This careful monitoring helps the neurologists and neurophysiologists to confirm the diagnosis and tailor treatment for this complex set of conditions. 

The Epilepsy South Africa National Indaba 2024, presented by Epilepsy SA, will be held from 13h00 to 18h00 on Thursday, 15 February 2024, hosted by Netcare at its head office at 76 Maude Street, Sandton. Limited seating is available for this free, in-person event – tickets are available through Quicket.

Epilepsy facts

From musicians Lil Wayne and Sir Elton John to Roman emperor Julius Caesar, French emperor Napoleon Bonaparte and sports legend Jonty Rhodes – people with epilepsy have distinguished themselves in diverse fields.   

“There are different types of epilepsy and various types of seizures caused by abnormal electrical impulses in the brain that can present differently depending on the area of the brain affected,” says Dr Naidoo.

“Epilepsy is a non-communicable disease, which means it cannot be passed from one person to another. Some people with epilepsy experience convulsive, or grand mal seizures, characterised by the body stiffening accompanied by uncontrolled muscle jerking, while other types of seizures can be extremely subtle.”

Dr Naidoo points out that not all seizures are attributable to epilepsy but may be pseudo-seizures caused by severe anxiety.

“In some cases, the person is unaware that they are having seizures, and they may experience symptoms that they wouldn’t associate with epilepsy, such as chronic headaches or migraines, memory loss, sleep disturbances and fatigue,” she says.

“Some people living with undiagnosed epilepsy are initially investigated for conditions including mood or behavioural disorders or certain kinds of cognitive impairment including dementia, when in fact they are living with undiagnosed – and therefore untreated and uncontrolled – epilepsy.

“If you have any concerns that you or someone you know may have undiagnosed epilepsy, it is extremely important to seek medical attention because sudden unexpected death in epilepsy is far less likely to occur in people who have been properly diagnosed and are professionally assisted in managing their condition.”

What to do if someone is having a seizure

Would you know what to do if you found someone having a grand mal seizure? Be prepared with this list of Do’s and Don’ts. 


  • Loosen constrictive clothing around the person’s throat.
  • Remove any sharp or hard objects, including furniture near the person, that may cause injury.
  • Remove spectacles if the person is wearing them.
  • Reassure any bystanders who may have gathered and are upset by what they’re witnessing, and ask them to give the person space while keeping a close eye on the person having the seizure.
  • Position the person so that they lie on their side in the recovery position, if possible, so that any fluid can drain from their mouth.
  • Call an emergency medical services provider, such as Netcare 911 on 082 911, if the person having a seizure is pregnant.
  • Call an emergency medical services provider if the seizure lasts longer than three minutes.


  • Do not panic.
  • Do not try to put your fingers or any object into the person’s mouth during the seizure.
  • Please do not hold the person down or restrain them.


  • Check that the person is breathing normally. At this stage, you may need to help clear any obstruction from the person’s mouth with your finger and put the person in the recovery position. This means laying the person on their side, with their mouth angled downward so that any fluid or vomit will drain out of the mouth instead of blocking the airway.
  • Allow the person to rest.
  • People are frequently confused or drowsy after a seizure or have a severe headache. Reassure them and stay with them until they are fully alert and recovered.
  • Only offer them food or drink once they are fully alert.
  • Check the person has not sustained any injuries during the seizure.

Image credit: Gerd Altmann/Pixabay

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