Despite being one of the world’s oldest known medical conditions, public fear and misunderstanding about epilepsy persists and for many people living with the disorder, the misconceptions and discrimination can be more difficult to overcome than the seizures themselves.

National Epilepsy Week seeks to raise awareness and educate the general public on epilepsy and the urgent need for improved treatment, better care, and greater investment in research.

According to EpilepsySociety.org.za, Epilepsy is not just one condition, but a group of many different ‘epilepsies’ with one thing in common: a tendency to have seizures that start in the brain.

Epilepsy is usually only diagnosed after a person has had more than one seizure and not all seizures are due to epilepsy. Epilepsy can happen in people of all ages, races and social classes and is most commonly diagnosed in children and in people over 65.

Different epilepsies are due to many different underlying causes. The causes can be complex, and sometimes hard to identify. A person might start having seizures because they have inherited epilepsy from one or both parents, a new change in a person’s genes, a structural change in a person’s brain or changes to the brain from certain conditions.

For those living with the disorder, COVID-19 has brought with it even more questions and anxiety.

A recent study published in the British Medical Journal suggests that people with epilepsy could have a slightly increased risk of being admitted to hospital or dying from coronavirus. The study does not show whether epilepsy itself causes this increased risk, or whether the risk is linked to other factors that could affect people with epilepsy.

Questions have also been raised about whether the COVID-19 vaccines are safe for people with epilepsy.

Studies have shown that COVID-19 vaccines are not expected to interact with epilepsy medicines. This means the vaccine should not affect how your medicines work, and your medicines should not affect the vaccine.

Like other vaccines, COVID-19 vaccines can cause mild or moderate side-effects, including fever. Not everyone will get side-effects, but if it does occur, most will go away after a few days. For some people with epilepsy, fever can make them more likely to have a seizure. For most people, the risk of serious illness from COVID-19 infection far outweighs the risk of side-effects from the COVID-19 vaccine.

This is particularly true for those living with epilepsy, who are more likely to have a seizure when they are unwell, particularly if they have an illness with a high temperature (fever). Fever is a symptom of coronavirus, so this could trigger seizures for some people with epilepsy.

Epilepsy affects 1 in every 100 people in South Africa and since 2004, SUDEP (Sudden Unexpected Death in Epilepsy) has increased by more than 100% in the country.

More research is needed into the causes of epilepsy, partly because of the feared the stigma associated with it, and other matters, such as Sudden Unexpected Death in Epilepsy [SUDEP] and new treatments for the effects of the disorder.