Epilepsy Stigma in Indonesia Holds Strong
The many symptoms of epilepsy make the disorder misunderstood, while many sufferers refuse to be treated, a professional group said on Thursday.
“Epilepsy [symptoms] number in the hundreds and are often misunderstood,” said Kurnia Kusumastuti, a medical doctor who chairs the Study Group on Epilepsy.
She said many societies often viewed epilepsy as a curse or considered it to be a contagious disorder.
“One of my patients underwent a seizure while in a public vehicle and was left on the side of the road,” Kurnia said.
She said epilepsy did not always result in seizures, with other symptoms ranging from loss of hearing and hallucinations to visual impairment.
Kurnia also said that epilepsy was not typically an inherited disorder.
“There is this possibility, but it’s very slim,” she said.
A father or mother who suffers from epilepsy has less than a 4 percent chance of passing it to his or her child. If both parents have the gene, the possibility that their child will get it is only 5 percent.
“Besides the small odds, the gene doesn’t always manifest itself into epilepsy,” Kurnia added.
The misunderstanding about epilepsy and the stigma that is often attached to it often results in sufferers refusing to acknowledge that they have the disorder. As a consequence, they refuse to get the appropriate treatment.
There are about 2.4 million epilepsy sufferers in Indonesia, according to the World Health Organization.