Epilepsy is supposed to be diagnosed by a neurologist, but in Gauteng there are only three hospitals with neurology departments. This means that everyone in the province who has epilepsy has to visit either Johannesburg General, Chris Hani Baragwanath or Pretoria Academic hospitals.
Epilepsy can, for the most part, be controlled by daily medication but people normally only receive a six-months prescription. They can collect their anti-epilepsy medication from their local clinics, but they have to return to the neurologist every six months to have their prescriptions renewed.
According to Professor Roland Eastman, President of the Neurology Association of South Africa (NASA), there are only about 120 neurologists in the country and most of them are in private practice. This makes it difficult for everyone in the public sector to see a neurologist.
‘Neurologists need to educate other doctors about treating epilepsy patients,’ said Eastman.
He added that there needed to be a guideline on how to treat people with epilepsy at primary health care facilities as well as ‘more diagnostic equipment like CT scan and MRI machines’.
On a more positive note, Eastman said South Africans had a choice of eight to nine drugs to treat epilepsy.
‘We are better off than most of our neighbouring countries in terms of availability of drugs,’ Eastman said. He also said that Groote Schuur Hospital in Cape Town is able to do brain operations on people with epilepsy who had treatment failure and he hopes such a facility will be extended elsewhere in the country’s public health facilities.
According to Epilepsy South African, almost a quarter of a million South Africans live with epilepsy.
‘Epilepsy has existed since Biblical times and yet people still know very little about it. The only time it truly becomes important to know about the condition is when you, yourself, or someone close to you is diagnosed with epilepsy,’ said RenÃ© Jarman of Epilepsy South Africa who is living with epilepsy.
‘People with epilepsy are not sufferers, they are people with epilepsy. They are not ‘epileptics’. They are people first and epilepsy is not who they are. Seizures should be called seizures and not attacks, fits, episodes, comas, faints or anything else ‘ they are seizures,’ added Jarman.
Research indicates that epilepsy is not inherited from the parents, although a child can inherit a tendency towards developing epilepsy. Epilepsy can occur at any time in a person’s life irrespective of race, gender, intelligence or social standing.
According to Epilepsy South Africa, discrimination also still exists although it has been proved beyond a doubt that the majority of children and adults with epilepsy are as intelligent and capable of attending mainstream schools and functioning in the open labour market as anyone else.
‘Society and people, in general, are afraid of that which they do not understand so many children and adults with epilepsy are hidden away and treated like outcasts because of their epilepsy. A person with epilepsy should be treated just like every other person,’ added Jarman.
‘Nothing should ever be put into the mouth of a person having a seizure,’ stressed Jarman. ‘A Human being is incapable of swallowing their own tongue.’
Meanwhile, Eastman said that there needed to be more awareness about the condition which is not a disease: ‘Epilepsy is a symptom that something has gone wrong in the brain temporarily, much like a runny nose and a cough is a symptom of having the flu.’
Gauteng health department spokesperson Dr Sello Mokoena said that his department was aware of the need for extra neurological facilities in the public sector and it had prioritised this issue.