Epilepsy affects 1 in every 100 people in South Africa, and more than 75% of people have their first seizure before the age of 20.
However, the Neurological Society of South Africa (NASA) says the risk of premature death in people with epilepsy is up to three times higher than the general population.
Causes are linked to Sudden Unexpected Death in Epilepsy (SUDEP) which has since 2004 seen an increase of more than 100% in South Africa, status epilepticus, unintentional injuries, and suicide.
On 27 May 2022, WHO’s World Health Assembly adopted an Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders 2022-2031 (IGAP) to improve access to care and treatment for neurological disorders.
Worldwide an estimated 50 million people suffer from epilepsy of which 70-80% are found in low- and middle-income countries where inadequate access to health facilities and potentially preventable causes of epilepsy, are lacking.
On World Brain Day (22 July) with the theme Brain Health for All, Dr Patty Frances, President of NASA said the wide treatment gap – the percentage of people with epilepsy whose seizures are not being appropriately treated at a given point in time – is estimated at 75% in low-income countries and is substantially higher in rural than in urban areas.
SA: Only 1 neurologist per 500 000 people
“In South Africa the treatment gap is exasperated by severe staff and resource shortages. The ratio of neurologists to the population in South Africa is 1 per 500 000, compared to 35 per 500,000 population in high-income countries, limited access to antiseizure medicines, lack of knowledge, misperceptions, and stigma.”
“Epilepsy affects people of all ages, genders, races, and income levels. It is a highly treatable condition and over 70% of people with epilepsy could live seizure-free if they had access to appropriate anti-seizure treatment, the most cost-effective of which are included in the WHO Model List of Essential Medicines,” Dr Francis said.
Dr Frances said health systems have not yet adequately responded to the burden of neurological disorders across the life course.
“While approximately 70% of people with neurological disorders live in low-income countries, this need is poorly recognised with only 28% of low-income countries having a dedicated policy for neurological disorders. Worldwide, public health system expenditure on neurological disorders also remains low.
“WHO’s Neurology Atlas 2017 highlights an imbalance in health system supply and demand with only 12% of countries surveyed reporting a separate budget line for neurological disorders. Even though Section 27 of the South African Constitution pertains to health matters, there is no specific mention of epilepsy or neurological disorders.”
What causes epilepsy?
Epilepsy is a medical condition and diagnosis is made when a person experiences a recurrent, unprovoked seizure. Epilepsy is most definitely not caused by a psychiatric disorder, demonic possession, ancestral displeasure, or hormonal dysfunction.
In approximately 66% of cases, the underlying cause of epilepsy is unknown. In the remaining cases, the underlying cause can include head injury which may occur at any age, birth injuries such as the lack of oxygen during the birth process, alcohol and drug abuse; neurodegeneration, metabolic or biochemical disturbances, strokes, infections, and brain tumors.
Migraines occur in about 19% of people with epilepsy whilst intellectual disability is seen in approximately 26% of adults and 30–40% of children with epilepsy.
“The overall risk of a child having unprovoked seizures is between 1% and 2% of the general population. However, this increases to approximately 6% if a parent has epilepsy. Up to 80% of people with epilepsy will be able to control their seizures with medication,” said Dr Francis.
Types of seizures and what you should do
- Generalised absence seizures. The person looks blank and stares and there may be 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 bath – 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)
- Some people find enormous support in belonging to a self-help or support group. For more information about a group in your area contact your nearest Epilepsy South Africa Branch.
For more information on epilepsy visit https://epilepsy.org.za.