Taking hands for research into epilepsy as a disease
The GladAfrica Foundation and University of Venda (UNIVEN) launched a four-year partnership to research epilepsy in order to assess the prevalence of epilepsy in rural communities of Limpopo and Mpumalanga and to develop response mechanisms.
LIMPOPO – The launch took place at UNIVEN Sports Hall last Wednesday. Epilepsy is one of the highly stigmatised health conditions within the communities. According to Epilepsy SA, epilepsy affects one out of 100 people and about 66% of the underlying causes of epilepsy are unknown (idiopathic epilepsy). Epilepsy is often surrounded by prejudice and myth, which can be overcome only with enormous difficulties.
This initiative is in line with the GladAfrica Foundation’s social investment programme which seeks to empower previously disadvantaged communities by providing them with information and tools that can improve the quality of their lives.
Prof Rachel Lebese, Univen professor, said epilepsy is a chronic disorder of the brain characterised by recurring seizures, which are brief episodes of involuntary movement of the body sometimes accompanied by loss of consciousness. “The disorder spans all age groups and to onlookers it can instil fear, prejudice and discrimination.”
She said people who suffer from epilepsy are often ostracised by their families and communities due to a lack of understanding of this condition. “There is a need to destigmatise epilepsy and raise awareness on its causes and medication options applicable to different types of epilepsy.”
The Co-Chairperson of the foundation, Noel Mashaba was affected with epilepsy during his childhood. “There is a need to explain epilepsy in the medical sense in order to dispel myths and misconceptions that exist in our communities. In most instances, epilepsy is regarded as a disability instead of a health condition,” said Mashaba.
To improve the quality of life of people with epilepsy worldwide, he said considerable efforts are needed to educate all sectors of society and the general public, as well as the families of people who live with epilepsy. “People with epilepsy are sometimes regarded as being chosen or being possessed’, depending on the prevailing popular belief, this can delay treatment and worsen society’s attitudes towards epileptic people. Despite the significant clinical and therapeutic progress of the last century, people with epilepsy continue to be stigmatised.” Prof Jan Crafford, Univen Deputy Vice-Chancellor: Academics, said the university is proud that the School of Health Sciences has managed to attract funding from the GladAfrica Foundation. “It is an important project for us to be involved in. We want to be known for being engaged in research, be relevant to the communities we serve and engage communities through research.”
