(From left) Psychologist Silvia Gorbachov Edward, Clinical Office John Thomas Taban (middle) and Kur Ezekiel, Executive Director of IEASS. (Photo: Awan Moses/Eye Radio).

The Executive Director of Institute for Epilepsy Awareness in South Sudan (IEASS) is encouraging the public to seek accurate information about epilepsy and counter myths contributing to stigma and discrimination against people living with the condition.

According to World Health Organization (WHO), epilepsy is a common neurological brain disorder that usually affects men, women and children of all ages.

Although there are no available data on the disease in South Sudan, it’s estimated that around 120,000 South Sudanese live with Epilepsy.

IEASS executive director, Kur Ezekiel, emphasized on the importance of debunking cultural myths and misinformation which he says can only fuels stigma against those living with the condition.

He said the organization has been involved in public awareness campaigns through the media, church masses and other social gatherings to accurately inform the public that epilepsy is just an ordinary illness that cannot be spread from one person to another.

“It is important to provide information because the discrimination and stigma has consequences on the persons living epilepsy,” he said.

He recounted one incident where a woman locked her epileptic child inside a house and fed it through the window due to myths that it is forbidden to be near someone with epilepsy.

“The mother cannot come closer. The food of this child is passed through the window. The child can have seizures inside there, pass urine and all those sorts of things and nobody is taking attention or giving attention to this child.”

“The mother is even afraid that this single child in the family that has got epilepsy, if he comes out of the house and gets mixed up with other children, the epilepsy will end up being passed to other children.”

According to John Thomas Taban, Clinical Officer at USRATUNA Center in Juba, it is vital that all people respond appropriately and compassionately to help foster an inclusive environment for people with epilepsy.

Mr. Taban also stressed that it is important to teach everyone that epilepsy doesn’t define a person’s abilities or potential.

“I am urging parents and caregivers to take proper care of the people with epilepsy. Whether the people are sick, you can live, talk and do everything needed for the person,” he said.

“Don’t discriminate and exclude the person by saying he is not stable. You’re supposed to treat them like any other person living at home. Because this disease doesn’t transmit from person to person through direct body contact.”

“It’s only recurrent in the brain but other state of the body is normal. If properly taken care, treated well and fed well, the person can work like any other person in the society. They’re graduates and working class with epilepsy. Public should know Epilepsy can be cured.”

International Epilepsy Day is an annual awareness-raising initiative organized every second Monday of the month of February by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) to acknowledge and highlight the challenges faced by people living with illness.

World Health Organization estimated that 50 million people globally and 85% live in low-middle income countries like South Sudan with limited access to treatment and characterized by stigma and discrimination.

Silvia Gorbachov Edward, a psychologist at Juba Teaching Hospital urges parents and caregivers to regularly take people with epilepsy to hospital for medical assistance.

“Persons with Epilepsy is unconcise to differentiate between unsafe and safe environments. He or she can fall anywhere be it on stones, water or fire. Because seizure can happen at any time.”

“As such, am appealing to parents monitored and take their loved to the hospital on noticing these symptoms immediately.”

“Parents and caregivers, if your child is falling twice or thrice in a day. Kindly rash them to any nearby health facilities for mental examinations. For you to know, if the child is having Epilepsy.”

This year’s International Epilepsy day was commemorated under the theme’’ My Epilepsy Journey’’.