Epilepsy, the misunderstood disorder
Amanda Dichabe | Wednesday April 8, 2015 10:00
You are much more impressed at the young man’s knowledge of financial matters and are eagerly waiting for him to say his next sentence when he makes some rapid hiccup-like sounds, foams at the mouth and clasps at the report before him, with all his might, crumpling it.
A quick-thinking and motherly member of the board quickly takes one of the teaspoons on the table, asks another board member to help her place the young man on the floor on his side and gently pushes the teaspoon between his teeth.
Another member of the board calls an ambulance, which arrives within a few minutes.
Sensing your confusion and shock the old board members explain to you that the young man had had an epileptic seizure.
Epilepsy (dikoto or leebana in Setswana) is a non-segregatory disorder that afflicts 75 million people worldwide, president of Young Epilepsy Botswana (YEB) Ishmael Nshakazhogwe revealed recently at an epilepsy awareness or Purple Day.
Nshakazhogwe said anybody could suffer from epilepsy, or fits, as the disorder is also known. As such, it is important to discard myths about the disorder.
“We should share our life advocacy and make others even have the opportunity to see Epilepsy, depression, brain injury or other conditions with a more true light and get rid of myths, misunderstandings and loss of hope”, he said.
The condition, he said, was due to an electrical disorder in the brain where the brain nerve cells misfire causing the body to act in the bizarre way.
He said it was sad that people continued to label and even shun those with epilepsy when sufferers desperately needed treatment and could on their own do nothing about the condition.
Nshakazhogwe admitted to experiencing the pain of seeing a family member struggle with epilepsy. In fact his decision to become a member of the Young Epilepsy Botswana had everything to do with his experience.
The motor vehicle magnate’s niece Priscilla Khan, 19, an epileptic, is the brainchild behind YEB. She had her first attack when she was 17.
“Epilepsy can be humiliating and even chase friends away,” she said at the Purple Day.
The condition affected her negatively, especially during school days but with the support she gets from her family she forgets that she is epileptic. Like her uncle, she is unhappy with people who play the doctor and think they can decide how epileptics live.
“When I was at school we had a trip to Cape Town and my teachers would not allow me to travel because of my condition. They gave me back my money.
“However my doctor wrote to the school stating that my condition was not critical and it was safe for me to travel,” said Khan who expressed her abhorrence at people who believe one could contract epilepsy from another person.
“People should learn to know more about this disorder and the facts and not be judgemental,” she remonstrated.
Khan startlingly revealed how difficult it was to get an epilepsy diagnosis in Botswana, as it appears there little or no specialist service for the condition.
She continued: “When I had my first attack, my parents took me to a number of private doctors and a private hospital at one point.
No one could tell what the problem was. My parents decided to seek medical help for me outside and eventually took me to a private doctor in Durban, South Africa.
“The doctor did a battery of tests, including an MRI scan. He concluded I had epilepsy and placed me on treatment.
I have responded well to the treatment, and the attacks are now wide apart, coming only once a month,” she said. Khan’s mother Naledi took up the story saying they were terrified by her daughter’s condition and could not understand what it was.
“We were at our wits’ end and had absolutely no idea where to go. We found ourselves traversing the length and breadth of this country looking for help.
“We consulted them all – traditional doctors, prophets and medical doctors. We even went as far as Gantsi to seek traditional doctor services,” she said.
Khan’s parents had the means to find her the best treatment. Sadly it is not so with many others. As a result, they are forced to seek help in every place.
Take 22- year old Kealeboga Matlale for example. His parents realised he had the condition in 1997, when he was four years old.
“They consulted many traditional doctors but I did not get better,” he said. He would become acutely aware of his condition as he grew older and started looking for a solution himself.
“One day I went to this church and had an attack during the service. The congregation simply assumed that I was having a demonic attack, and waited for what they believed was a manifestation of the evil spirits to subside.
“I woke up in a pool of blood. I had fallen on my head, landed on some sharp, object, which left me with a huge gash. As I fell I upset a pile of bricks that came crashing down on me,” he said.
Matlale’s condition has refused to go away even with the help of modern medicine. His attacks are so frequent that he has had to quit school. In fact he had an attack just as we were interviewing him.
It is not always doom and gloom though for sufferers of any condition. Some help does come sometimes even from the most despised of places.
‘At times we tend not to believe in our own culture but it does work. I am a living testimony, which proves that some of our old traditional doctors have the power to heal.
“I was diagnosed with neurological epilepsy about 20 years ago, I used to have an attack every now and then especially when I got angry, but one traditional doctor in Lobatse healed me.
“He gave me some herbs and said I should sprinkle them on meat that was cooked without any salt or spices. I followed his instruction for about three days and I never got an attack since that day up to now, not even once,” said a former epilepsy sufferer.
Epilepsy sufferer Itlhabeleng Khan said people should not shun epileptics and parents should not hide their children who have the condition.
She also said people should learn how to handle an epileptic under attack, as often there is confusion when someone has an attack.
“People should also inform themselves about the condition. It would be great if people learnt about this disorder. That would go a long way in disabusing them of the many myths and stereotypes about this condition,” she said.