Epilepsy not a contagious disease which needs isolation

By Jenifer James

In South Sudan, a common misconception persists, and many believe that epilepsy is a contagious disease.

This misinformation leads to fear that the disease can be spread through touch, saliva, or simply being next to someone with epilepsy, which fuels unnecessary stigma, isolation, and discrimination.

These harmful myths prevent individuals with epilepsy from receiving the care, support, and acceptance they deserve from the family, like those of Elias Abugo and others.

The Dawn newspaper sat down with Abugo, a young man living with epilepsy, who courageously shared his story about the challenges faced by those who have the condition in South Sudan.

Abugo, dressed in a simple white T-shirt and black trousers, recalled his first seizure in 2017 during an exclusive interview at Juba Teaching Hospital.

He remembers the moment marked a significant turning point in his life.

“It all started in 2017,” Abugo said, his voice filled with emotion. “I fell and was rushed to the hospital. After the doctor confirmed my condition, my mother received the news. I was devastated. I thought, ‘This disease will kill me.”

As Abugo struggled to come to terms with the diagnosis, his family’s reaction added to the pain.

“My family isolated me. I had my own separate plate, cup, and was kept away from everyone,” he explained. “When I asked my mother why the family kept their distance, she always told me that epilepsy is highly contagious, that it can easily spread from one person to another.”

The stigma led Abugo to retreat further into isolation.

“Since I was 17, I have lived in fear of being judged and rejected. I distanced myself from everyone, my family and my friends because of the disease.”

 “We need to educate people about epilepsy, when we will help end the isolation and discrimination that so many of us face,” Abugo said.

In an effort to shed light on this issue, The Dawn newspaper visited Lologo One, the residential area where Abugo lives, to speak with his neighbour, Rosaline Kiden who confirmed the widespread fear and misinformation in the community.

“People are scared to even touch or be near Elias. There’s this false information that the disease can be transmitted, and it leads to the isolation of Elias from people,” Kiden said.

According to Kiden, the family normally gives Abugo food on different plates.

“Abugo usually eats the same food that the family is eating but on different plates and drinks water from different cups,’’ she said.

“I have ever eaten with Elias and I did not get the disease meaning the disease can’t be transfer from one person to other, so since then I used to be closed to him until now,” Kiden concluded.

However, the physiologist at Juba Teaching Hospital, Dr. Silvia Gorbachov Edward, clarified the misinformation about the disease and said that the hospital is working to challenge these myths.

She explained that epilepsy is a neurological condition caused by abnormal brain activity and is not contagious.

Gorbachov noted that most parents keep isolating children from epilepsy patients, claiming that the disease can be transferred.

“Epilepsy is not an infectious disease, it cannot be spread from person to person,” She said. “The fear that it can be transmitted is completely unfounded,” she disclosed.

Gorbachov noted that spreading accurate information is important to breaking the stigma and ensuring that people with epilepsy are treated with dignity and respect, adding that it is also crucial to dispel these harmful beliefs and create an environment where individuals with epilepsy can feel safe, supported, and included in society.

The Foundation of Epilepsy Awareness in South Sudan stated that 1 out of 100 South Sudanese live with epilepsy; that is approximately 120,000 South Sudanese who suffer from this disease.

This story is reported with a grant from Journalists for Human Rights under the Tackling Mis/Disinformation Project, funded by the Peace and Stabilization Program of the Government of Canada.