A special piece for National Epilepsy Week
Written By: Savraj Kaur – Fundraising Development Manager
In 2013, a medic told me I had reaped the fruits of a postcode lottery. My prize was an awake-craniotomy at a top neurosurgical hospital in London. Even my surgeon was famous in the field, and head of the surgical arm of a preeminent European epilepsy research group.
Being diagnosed with epilepsy not long before was taxing. My driving licence was revoked, I stopped horse-riding, and swimming was none other than high risk. Clutching at straws, I would broker deals with my brain’s neurons. But they held me ransom as each medication failed and I lost trust in my body.
I also learned that epilepsy is one of the world’s oldest recognised and common conditions; a mammoth 50 million people share this volatile disorder. But global parallels end here.
80% of people with epilepsy live in developing countries, with a rate of diagnosis up to two times higher. Many of these cases are preventable as they result from an increased exposure to malaria, parasitic infections of the central nervous system, and more. Epilepsy can also be treated with inexpensive daily medication, but access is not available to all.
At times, stigma can feel even worse than seizures themselves. As I became unsure of what was happening to me, I limited how much I socialised. I didn’t want to be caught at my most vulnerable or frighten those around me.
Neuropsychologist Nimmi Parikh emphasises that strong cultural systems can have negative implications for stigma, as archaic attitudes prevail . As a result, she outlines the developing world as a more isolating place for those living with epilepsy:
- In many African countries epilepsy is considered to be contagious and caused by supernatural powers
- In Zambia, people with epilepsy are reported to have felt they were treated as inadequate and consequently preferred to avoid social contact
- In Pakistan, a study showed that women with epilepsy often believed they were dangerous and encouraged others to avoid them
- And in China, research has highlighted epilepsy as being socially disruptive with far-reaching impact on quality of life. High levels of anxiety were reported in relation to embarrassment and loss of identity from having a seizure in public.
In the UK, as those closest to me stuck by me, such cases of ostracism were upsetting to hear about. But, as an ethnic minority, I also knew that cultural systems can be powerfully leveraged to diminish stigma. As such, cultural influences mustn’t be underestimated in the case of epilepsy sufferers. With targeted education, wider understanding can be bred, and valuable security provided from within these same tight social networks.
It appeared I had a growing tumour which was causing my brain to play havoc, so I was offered surgery. With my private healthcare rivalled by the NHS, the prospects for a renewed lease of life were compelling. I and my family were taken by the hand, confident in the medical infrastructure. My surgery was a success.
Nowadays, I am fortunate to live free from epilepsy and without drugs. With time, I also remain concerned for those enduring neurological difficulties, and realise how – from medics to chaplains, families and friends, educators to peers – the networks for managing any health challenge are instrumental.
Organisations like AbleChildAfrica are few and far between, but their unique approach in recognising the power of local solutions to local problems – including those of pervasive stigma – are critical to epilepsy sufferers in some of the poorest parts of the world.
As such, the lotteries of birth can be challenged. In the meantime we have our work cut out.
 Epilepsy is one of the world’s oldest recognized conditions, with written records dating back to 4000 BC. (http://www.who.int/mediacentre/factsheets/fs999/en/), Accessed May 2015
 Parikh, N. (2011), “Cultural Differences”, Epilepsy Society research paper
Image source: CC BY-SA 3.0, File:Pilocytic astrocytoma