Epilepsy Research Project

Epilepsy is one of the health conditions that remains highly stigmatised within our communities. It is a condition that can affect anybody, the old and young as it has no boundaries.

According to Epilepsy SA, epilepsy affects 1 out of 100 people and about 66% of the underlying causes of epilepsy are unknown (idiopathic epilepsy).

OVERVIEW

People who suffer from epilepsy are often treated differently by their families and communities due to various reasons.

This could be perpetuated by myths; the lack of information or knowledge of care options at the disposal of communities, especially in rural communities.  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 GladAfrica Foundation, Mr. Noel Mashaba, was affected by epilepsy from a young age hence this disorder remains high priority for the GladAfrica Foundation.
  • Ultimately this led to the GladAfrica Foundation partnership with the University of Venda which is aimed at researching epilepsy in rural communities of Limpopo and Mpumalanga.
  • The aim is to develop and implement relevant education and awareness initiatives that will demystify epilepsy in a clinical way.

According to the World Health Organisation…

more than 50 million people live with epilepsy globally; 80% live in low-income and middle-income countries and treatment gap causes have been identified as:

  • Lack of trained staff

  • Poor access to anti-epileptic medicines

  • Societal misconceptions

  • Poverty

  • Low prioritisation of the treatment of epilepsy

BACKGROUND

  • The GladAfrica Foundation and the University of Venda will partner on research on the prevalence of epilepsy in the rural communities of Limpopo and Mpumalanga.
  • This research will be implemented through the University of Venda’s School of Health Sciences over a period of four years starting this year. The research is two-pronged as it will be comprised of a needs assessment and an epilepsy awareness/intervention programme to be implemented in the affected communities.
  • The University has submitted a preliminary proposal on how the research will be implemented. This collaborative project will be formalised through a Memorandum of Understanding.
  • According to Epilepsy South Africa, epilepsy is a neurological condition characterised by unusual electrical activity in the brain causing unprovoked seizures. The cause of symptomatic epilepsy can differ and include:
  • Head injury which may occur at any age
  • Birth injury such as the lack of oxygen during the birth process
  • Alcohol and drug abuse
  • Degeneration (aging)
  • Metabolic or biochemical disturbances or imbalance.

CONTEXT

  • According to Epilepsy South Africa, epilepsy affects 1 in every 100 people in South Africa, i.e. approximately half a million South Africans based on a total estimated population of 52 million. If every person with epilepsy has 4 immediate family members, at least another 2 million South Africans are affected by the condition. There are approximately 50 million people with epilepsy worldwide.
  • This collaborative research between the GladAfrica Foundation and the University of Venda, on epilepsy in rural communities of Limpopo and Mpumalanga, is a continuous effort of the Foundation to seek ways to empower the disadvantaged communities by providing them with information on health concerns and care options. The co-chairperson of the GladAfrica Foundation was affected by epilepsy, hence this health condition remains high priority for the Foundation.
  • Improving lives of people who live in abject poverty is a key priority of the GladAfrica Foundation. The Foundation has, over the years, facilitated various donations to schools and charities in rural and urban communities, especially those with the dire need for essential goods for recreation, educational material/guidance and/or personal hygiene.
  • Projects undertaken by the Foundation are implemented in collaboration with various sectors of society such as academic institutions, donors and or non-governmental organisations that share a common objective of improving lives of those who are less privileged. Implementation is also heightened during national celebrations aimed at empowering youth, women, children and persons with disabilities.
  • The Foundation also has strong education and social development programme which prioritises youth empowerment through the provision of bursaries for further education at tertiary institutions, career guidance and mentorship. The Foundation believes that, through education, the challenge of poverty can be overcome.

CHALLENGES

  1. Epilepsy is a highly stigmatised health condition due to a lack of education and awareness on its causes and how it affects the people who live with this health condition. In most instances, it is regarded as a disability instead of a health condition. There is a need to explain epilepsy in the medical sense in order to dispel myths and misconceptions that exists in communities.
  2. There is lack of campaigns aimed at raising awareness about epilepsy, various types of epilepsy and how people who have this condition or those who live with this condition can exercise care. Epilepsy South Africa is the main advocacy organisation for epilepsy. There is a need to work together with more social partners and health organisations in order to raise awareness about epilepsy.
  3. Lack of education or awareness could be the cause for various perceptions and myths about epilepsy, especially in rural communities. People who are mostly affected are from poor backgrounds, hence the initiation of this research by the GladAfrica Foundation and focus on rural communities of Limpopo and Mpumalanga.
  4. According to Epilepsy South Africa (Fact Sheet), epilepsy can affect employment opportunities and alcohol increase the seizures. Alcohol consumption for recreational purposes remains very high in South Africa. There is a need to highlight the disadvantages of alcohol consumption by epileptic people and how it can also affect employee productivity in the workplace.

Epilepsy Research Project partnership between the GladAfrica Foundation and the University of Venda

The GladAfrica Foundation is pleased to announce its new community development undertaking, the Epilepsy Research Project. In line with its mandate of uplifting communities through socially meaningful projects, the GladAfrica Foundation and the University of Venda will formally enter into a partnership to research about epilepsy in rural communities of Limpopo and Mpumalanga.

The co-chairperson of the GladAfrica Foundation, Mr. Noel Mashaba, was affected by epilepsy from a young age hence this disorder remains high priority for the GladAfrica Foundation. Ultimately this led to the GladAfrica Foundation partnership with the University of Venda which is aimed at researching epilepsy in rural communities of Limpopo and Mpumalanga.

A four-year partnership will be entered into between the GladAfrica Foundation and the University of Venda on the 12th of February 2020. This event will be attended by academics, students and some community representatives. This research will be undertaken by research experts and post-graduate students for the duration. The aim is to develop and implement relevant education and awareness initiatives that will demystify epilepsy in a clinical way.

According to the World Health Organisation, more than 50 million people live with epilepsy globally; 80% live in low-income and middle-income countries and according to Epilepsy SA, epilepsy affects 1 out of 100 people and about 66% of the underlying causes of epilepsy are unknown (idiopathic epilepsy). These statistics demonstrate the seriousness of this medical condition, which is not widely spoken about, due to various reasons such as the stigma and myths attached to it.

Multi-sector engagements are required in order to raise awareness about epilepsy hence the initiation of this imminent partnership with the University of Venda. It is through education and awareness campaigns that we can change the narrative about epilepsy and eliminate the stigma about this medical condition.

More information about this project will be shared with you in due course. Should you wish to participate in this initiative or are affected by epilepsy and would want to share your experience, please contact the GladAfrica Foundation on the following email address:

epilepsyresearch@gladafricafoundation.com