Despite efforts to educate school teachers and the public in general, young people with epilepsy still suffer the consequences of stigma and ignorance.
Siyabonga Ntjangasi, 14, has epilepsy and says nobody should be discriminated against simply because they have a chronic condition, even if it is not well understood.
A neurological disorder
“I remember when I was diagnosed with an epilepsy disorder seven years ago. I was in primary school and things were much easier as I never experienced stigma and discrimination among my peers. But life has been much harder since I started high school after a few of my school mates witnessed me having seizure. The news immediately spread all over the school and they started calling me name such as 'mafa avuke' which means 'dying and waking up’,” Siyabonga said.
Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness or convulsions associated with abnormal electrical activity in the brain.
Rose Ntjangasi, Siyabonga’s mother, explained, “Just few months into high school and his behaviour changed and he had more seizures. Even when I spoke with him, he couldn’t open up to me. I thought it was just adolescence, but I found out that he was no longer taking his treatment. I was heartbroken when my son finally admitted to me that he stopped taking the treatment because even though he was taking the medicine his peers still discriminated against him.”
During a seizure an epileptic sufferer experiences abnormal behaviour, with symptoms and sensations sometimes including loss of consciousness.
Teenagers remain misinformed
Jasper Zwane, spokesperson for the Mpumalanga Department of Education, said the department was busy training teachers through a policy on screening, identification, assessment and support to enable them to identify and profile learners with the condition. Those children would then be sent for further assessment and support. Teachers are taught management strategies by Epilepsy South Africa, which specialises in professional advice and information both to the public and professionals on all aspects of epilepsy training and counselling.
But despite these efforts, some teenagers in Mpumalanga remain misinformed.
Nokwanda Ndlovu, 14, said, “I have seen kids with epilepsy in my school, but my parents have told my siblings and I that kids with epilepsy are cursed and that we should not be friends with them. So I can’t socialize with them. They know very well that they are not allowed to get close to me because I don’t want to catch their epilepsy,” said Nokwanda.
Sister Zanele Zwane, a nurse, said, “With the right treatment epilepsy can be managed. Patients with chronic illnesses such as epilepsy need love and support to encourage them not to default on their treatment. They surely don’t need to be stigmatised or discriminated against. Parents should please not mislead their children with the wrong information about epilepsy because those children will end up bullying kids with epilepsy because of what they have been taught at home.”
District officials in collaboration with local NGO’s including Epilepsy South Africa will conduct advocacy campaigns to make schools and communities more aware of the condition. “Advocacy campaigns are conducted on an ongoing basis and onsite awareness and classroom management workshops are conducted quarterly by different districts as dictated by their implementation,” said Zwane. – Health-e News.
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