MISUNDERSTOOD ILLNESS
Epilepsy patients still labelled ‘demon’ possessed Calls for awareness in workplaces, schools
People living with epilepsy in Botswana face challenges that include shortages of medication in clinics as well as shortages of Neuro Surgeons, causing patients to wait a long time for medical help.
Some epileptic children do not go to school because it is feared they will scare other students when having epilepsy seizure. Some people have also been denied employment due to epilepsy. Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. Public Relations Officer at Young Epilepsy Botswana (YEB), Bame Motsomatshukudu said during this year’s 9th Annual Purple Walk to raise awareness about the ailment that there are still some myths that epilepsy patients are demon possessed. This is as a result of lack of awareness by family members and the community. She said most people do not know how to administer first aid during a seizure, which might result in loss of life. Motsomatshukudu said there is also inadequate research on causes, management and cure of epilepsy which makes it difficult for them when it comes to statistical information compilation. First Lady Neo Masisi said at the purple walk that was commemorated under the theme, ‘Epilepsy in the work place,’ that Human Resource departments should promote epilepsy awareness within their organisations.
She concurred that people living with Epilepsy in Botswana face numerous challenges and urged the community and those in the workplace to get informed about Epilepsy to be able to know what to do when an Epilepsy patient has a seizure. “It is important to know the basics of dealing with an Epilepsy patient because sometimes you do not need to call an ambulance but can give first aid yourself to your colleagues. It is upon all of us to engage with them, understand the condition further and give them support,” she said. “I also wish to call on the nation to join hands with us as we declare and dedicate our support for people living with epilepsy. Family members and communities at large have a crucial and critical role to play in providing a conductive environment to support their care and prevent injuries they sustain due to seizures,” Masisi added. Nearly 80 percent of people with epilepsy live in low and middle income countries.
It is estimated that up to 70 percent of people living with epilepsy could live seizure-free if properly diagnosed and treated. YEB was formed as a Support Group in 2008 by Ithabeleng Nshakazhogwe, following her diagnosis with Epilepsy. The Support Group was later registered as a Society in 2014, and their objectives include helping those affected by epilepsy with financial, emotional and physical support. They also aim to educate the nation about epilepsy care and management, support people living with epilepsy and their families and to stop discrimination and stigma against people living with epilepsy as well as fight for the rights of people living with epilepsy.
The YEB Society has a membership of 35 people and 10 Committee members. They raise awareness by holding talks with different sectors of community, outreach activities in the villages and Annual Purple Walks.
They deliberately selected this year’s theme, ‘Epilepsy in the workplace’ because of observations that people living with Epilepsy end up losing their jobs as they feel that they do not get enough support at their workplaces, especially when they have a seizure as more people still lack accurate information on this condition.