Bust the stigma of epilepsy with knowledge

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.

“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,” said Mande Toubkin, Netcare’s general manager of trauma, transplant, and corporate social investment.

One in every 100 people in SA affected

Epilepsy affects one in every 100 people in South Africa, representing about 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.

“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.”

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Dr Vanmala Naidoo, a neurologist at the Netcare Mulbarton Hospital epilepsy monitoring unit, says: “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 fuels social stigma

“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 said.

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.”

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 might otherwise be difficult to notice. This careful monitoring helps the neurologists and neurophysiologists to confirm the diagnosis and tailor treatment.

Epilepsy facts

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

ALSO READ: What you need to know about epilepsy

“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,” said Naidoo.

“Epilepsy is a noncommunicable 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.”

Not all seizures attributable to epilepsy

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 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.

“If you have any concerns that you or someone you know may have undiagnosed epilepsy, it is extremely important to seek medical attention.”

What to do if someone is having a seizure:

• Loosen constrictive clothing around the person’s throat.
• Remove any sharp or hard objects, including furniture near the person, that might cause injury.
• 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 if the seizure lasts longer than three minutes.

ALSO READ: How to deal with epilepsy

What not to do:

• 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.