It was eight years ago when her then 13-year- old daughter, Ithabeleng, suddenly had a seizure and passed out. Like any parent seeing it for the first time Naledi Khan assumed the worst.
But following a visit to the doctor she was advised to have her daughter tested for epilepsy. Ithabeleng, now 21 years old, was diagnosed with epilepsy, a chronic disorder, characterised by recurrent, unprovoked seizures.
It was this discovery and the subsequent attacks that led to the two of them founding Young Epilepsy Botswana – an association aimed at raising awareness and providing support for those living with and affected by the condition.
“My daughter was a passionate athlete at the time,” Khan tells Lifestyle, “She was captain of her school basketball team.” Khan says the frequency of the attacks forced her daughter not only out of her basketball team but out of school all together.
“I had to provide home schooling for her because being out there was not safe for her anymore,” Khan says.
She says while she worried for her daughter’s physical safety, Ithabeleng also had to deal with the emotional abuse due to the stigma attached to epilepsy. “She had some people telling her she needed to be exorcised of demons.”
She says while her daughter receives treatment it does not completely eliminate seizures. It just reduces the frequency, she says. Through Young Epilepsy Botswana, Khan and her daughter, will join citizens across the world by wearing purple and undertaking their third annual Purple Walk in support of those affected and creating awareness about epilepsy.
“Despite being a major national health concern, the public is often unable to recognise common seizure types or how to respond with appropriate first aid,” says a statement from Young Epilepsy Botswana. “Consequently, persons with epilepsy often face social stigma and discrimination.”
The statement also makes reference to a then fourth grade Canadian pupil, Cassidy Megan, who in 2008 extended a challenge to people across the world to stand up and show support for those living with the life altering neurological disorder.
She managed to gain the support of politicians, celebrities, businesses, and schools and their efforts helped to make her Purple Day an internationally recognised event.
Commemoration for the Purple Day will take place on March 25 starting with a walk from Grand Palm Hotel in Gaborone Block 5 to Lamila Lodge in Mogoditshane and back.
The association currently has only a handful of members but provides support to those affected throughout the country. “We need volunteers to help us distribute pamphlets and help spread knowledge and awareness about epilepsy,” Khan tells Lifestyle.
“We also require funds to transport and accommodate affected individuals to come and get neurological and counseling assistance here in Gaborone, she says.
According to the Epilepsy Foundation, many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well.
Sometimes EEG testing, clinical history, family history and outlook are similar among a group of people with epilepsy. In these situations, their condition can be defined as a specific epilepsy syndrome. The human brain is the source of human epilepsy. Although the symptoms of a seizure may affect any part of the body, the electrical events that produce the symptoms occur in the brain.
Its location, how it spreads and how much of the brain is affected, and how long it lasts all have profound effects. These factors determine the character of a seizure and its impact on the individual.
Essentially, anything the brain can do, it can do in the form of a seizure. Having seizures and epilepsy can affect one’s safety, relationships, work, driving and so much more. Public perception and treatment of people with epilepsy are often bigger problems than actual seizures.