Seizures attract stigma
Epilepsy causes repeated seizures. Seizures involve sudden, uncontrolled electrical activity in the brain and manifest in many different ways, such as changes in physical behaviour and movement, sensations in the individual, and consciousness. Particularly when recurrent or prolonged, seizures can be dangerous and life-threatening. Being close to fire, or water, or elevated from the ground when having a seizure increases the risk of harm.
Seizures can be very visible and very frightening, which can stigmatise the person experiencing them.
Marilen Osinalde, who recently completed an assignment as mental health activity manager in the program, explains: “In Liberia, epilepsy is a condition that is not very well known and children will usually have many symptoms, especially physical, such as convulsions. This can be scary for them and anyone looking on. The children stop going to school, they are socially excluded, and sometimes they develop psychological suffering or mental disorders. Stigma is one of the risk factors for them to not continue their treatment.”
There is a common belief that epilepsy is a curse on the person, says Vivian T Sambola, a psychosocial worker at Clara Town Health Centre, one of five health facilities involved in the program. “Many children with epilepsy are deprived of going to school because their family and immediate community think that they are useless. They are not given the same opportunity as other children; they are left to do all the domestic work.”
Other myths compound the problem. “We explain that epilepsy is not contagious, but having a child experiencing seizures is embarrassing for the mother and the family,” says Sambola. School teachers may refuse to have the student in their class, and peers can be quick to shun or bully them.
For parents whose hopes were pinned on their children gaining the education they missed out on, some unable to read or write themselves, this feels like a cruel blow.