EPILEPSY INDABA ’24
15 February 2024
The annual Epilepsy SA Indaba was recently held in February, in proud partnership with Netcare, at their head office auditorium in Sandton, Johannesburg. This impactful gathering included great stories from both speakers and audience alike.
The keynote speech was given by outgoing Netcare CEO Dr Richard Friedland, in which he commended the tremendous work being done by our organisation. He spoke on the necessity for a focus on good healthcare, addressing the “…hypertension, heart disease, diabetes… and we can include epilepsy in that” and encouraged the audience to make greater participation in their own healthcare, being proactive towards pre-empting events (such as seizures) with better diets, a greater awareness of our own health status, and engaging more with healthcare providers.
Dr Anchen Laubscher, Group Medical Director Netcare Ltd, welcomed guests, doctors and specialists alike to their head office with an insightful discussion on their view of Epilepsy and co-morbidities, accumulated data and the interactivity of Epilepsy and other conditions that don’t exist in isolation. She highlighted the importance of the value of patient dignity, the value of compassion with those diagnosed with Epilepsy and working to de-stigmatise the disease.
Dr Vuyiswa Mandita, a neurologist in private practice who has recently moved her practice to Milpark hospital. She presented a deep insight on ‘decoding’ neurological conditions, that is one of her passions, with areas of interest including epilepsy, stroke, headaches and rare neurological conditions. Dr Mandtia spoke of the importance of a patient centred practice aiming at a multi- disciplinary approach to neurological conditions and treating the patient as a whole.
The Epilepsy South Africa Flame of Courage 2023 co-winner, Chamaine Kruger, joined us from the South Cape Karoo branch and spoke very much from the heart about her personal, difficult journey with Epilepsy and finding acceptance and peace
Brining a very passionate, advocacy-driven approach from national government’s perspective was Phuti Mabelebele, currently Chief Director- Advocacy and Mainstreaming , Rights of Persons with Disabilities Branch, Dept. of Women, Youth and Persons with Disabilities in the Presidency. She has worked in the Women, Youth and Disability space for over many years as a public servant in various government Portfolios and at different levels of responsibility. Working closely with our national director Sharlene Cassel, there has been great strides towards the de-stigmatisation of epilepsy at national level and Phuti’s infectious energy gave many at the Indaba great hope towards better recognition of the needs of people with Epilepsy and other neurological conditions.
Dr Thea Van Der Merwe is a Psychiatrist in Private Practice, who herself at the age of 33 was diagnosed with Epilepsy and has been living with its ups and downs ever since. With a very moving personal story of her recent health experience, in which Epilepsy is central, she helped the audience understand the great need for both empathy, and structured support of those living with Epilepsy and other neurological conditions.
Our national director Sharlene Cassel concluded the Indaba with an educational presentation on the IGAP – the Intersectoral Global Action Plan on Epilepsy and other neurological conditions – that is central to Epilepsy South Africa’s national focus for the next three years, giving insight as to how this works for our community and the organisation as a whole. You can read more about the IGAP here.
#StampOutStigma
BACKGROUND
EPILEPSY SOUTH AFRICA is a registered non-profit, South African organisation, dedicated to working with people with epilepsy and their families. Epilepsy South Africa seeks to enable people with epilepsy to lead meaningful and enriching lives, and focuses on creating opportunities for people with epilepsy both to be included into mainstream society, and to reach their full potential.
This year, Epilepsy South Africa called on people from all walks of life to use Epilepsy Week from 12 to 18 February, 2024, to raise awareness of, broaden education about, and address the ongoing stigma around Epilepsy.
Epilepsy is a neurological condition that can affect anyone, regardless of age, gender, race, or level of health. Like so many neurological conditions, it remains an unseen disability that often, because of social stigma, is either ignored or suppressed. This can lead to serious health consequences, or even loss of life.
Recent indications are that a majority of those diagnosed with Epilepsy choose not to share the diagnosis with their employers, friends or, sometimes, even their families. We hope that through ongoing public engagement and discussion, coupled with education and a clear stance against discrimination for unseen disabilities, we can together address these issues and Stamp Out Stigma for those living with, or who are affected by, Epilepsy and other neurological conditions.
According to the World Health Organisation (WHO), some 50 million people worldwide live with Epilepsy, and around 50 percent experience some form of stigma.
Let’s stamp out stigma by empowering and amplifying the voice of people with, and those affected by, Epilepsy.
In the words of the great Nelson Mandela:
“Education is the most powerful weapon which you can use to change the world.”
So, join us and let’s be the change we want to see in the world.
For more information, email marketing@epilepsy.org.za.