Raising an Epileptic Child in Uganda

Epilepsy continues to be a challenge as experts reveal that 60% of the cause of the disease is unknown.

Those that live with the disease continue to face stigma from society because of the myths surrounding the disease.

Namakula Benna is a 40year old single mother to five children. Of her four children, her 13 year old boy, Ssebunya Grace is epileptic.  Ssebunya was a sickly baby whose health Improved as he grew older.  However, at age seven his health took a turn for the worse and he started suffering seizures.

The cause of Ssebunya’s seizures was diagnosed after a hospital visit: he was epileptic.

“I first went to Naguru, I explained to the doctor about my son’s condition and I was sent to Mulago. I was told that he had epilepsy,” Namakula says.

https://www.youtube.com/watch?v=O4i5zboSj8U

As time went by, Ssebunya’s condition worsened. He often experienced while Namakula was away at work. She would return home to find him with injuries. Few people would help him because his condition was strange and he was treated as an outcast. Those around Ssebunya feared they might contract the disease while trying to help him.

With no help and unable to afford a nurse for Ssebunya, Namakula was forced to quit her job to take fuller care of her son. The condition was naturally affecting Ssebunya’s academic performance.

“The effects revealed themselves in 2015. He suffered various attacks. The effects became intense.” Namakula admits that when her son is in the throes of an attack, she becomes frightened.

Ssebunya explains how his condition has ostracized him wherever he finds himself.  “At some occasion when I suffered an attack, the whole class including the teacher abandoned me in fear apart from my brother,” Ssebunya remembers.

Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.

Anyone can develop epilepsy. Epilepsy affects both males and females of all races, ethnic backgrounds and ages.

According to Doctor Kikabi Edward, 60% of the cause of the disorder is unknown leaving only 40% known cause. Epilepsy is genetic carrying 30% and the remaining 10% is acquired. Epilepsy is not contracted. In Uganda, epilepsy is more in children between 2 and 15years caused by majorly prolonged and obstructed labor and among the elderly between 65 and 80 years usually caused by stroke.

“A child may get cerebral malaria and when some cells die, this may act as a focal point for epilepsy.” Dr Kikabi stresses

Seizure symptoms can vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs. However, in Uganda most people are more familiar with generalized seizures.

Dr. Kikabi says that there is no known cure for epilepsy though some children out grow the disorder.

He however says that most of the Ugandans, have attributed the condition to witchcraft and many have been discriminated against.

Having a single seizure doesn't mean you have epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis.

Seizures can be triggered by stress, self deprivation, flickering lights, illnesses or injury. Because it is a disorder of the central nervous system, effects can be felt throughout the body .Due to unpredictability of the seizures there can be a great emotional toll.

Treatment with medications or sometimes surgery can control seizures for the majority of people with epilepsy. Some people require lifelong treatment to control seizures, but for others, the seizures eventually go away. Some children with epilepsy may outgrow the condition with age.

However, without medication, epilepsy can completely destroy the brain cells.

“when a person is diagnosed with epilepsy they must adhere to the medication. Failure to do so results into severe mental retardation.” Dr. Kikabi warns.

Dr. Kikabi notes that epilepsy kills usually when someone experiences seizures one after the other for about thirty minutes. He warns people who suffer from epilepsy to avoid driving, swimming and moving alone because this could cost them their life in case of a seizure.