Epilepsy: Neurological Problem, not Satanic Infliction
Over four million persons are estimated to be suffering from epilepsy disorder in Nigeria, said President of Angie Epilepsy Foundation, Mrs. Angela Asemota at a public presentation in Benin City, the Edo State capital, with the theme “The Myths and Realities of Epilepsy”.
What prompted the theme, however, was that in the towns and villages across Nigeria, the myths surrounding epilepsy are that it is caused by external forces such as fate, witchcraft, hereditary, demon and so many other external factors. Hence, epileptic patients are isolated and relegated to the background.
Some perceived myths It is believed that if one makes jest of an epileptic patient, he or she is bound to contract epilepsy. This myth has been there for generations and upon public awareness about the cause of epilepsy, many persons are wont to dispelling the reality.
A case in study is the contemporary research by Springer International Publishing AG, “The belief among Nigerians that epilepsy is infectious is widely reported in the relevant professional literature.
This belief, however, has not been subjected to scientific investigation and its magnitude has not been assessed, despite the fact that it is one of the most serious obstacles to the care and rehabilitation of epileptics.”
The study further reported that it interviewed a wide spectrum of the Nigerian population, including medical students and found that most Nigerians, including some medical students, share the belief that epilepsy is contagious.
“They would therefore not eat, drink, or sleep in the same room with an epileptic, or touch him during his fit. The origin of the belief is now lost in obscurity, but traditional healers seem to be its current repository and propagators. The views of the latter are reinforced and sustained by people fleeing in panic from a patient experiencing a grand mal attack,” the report added.
Beliefs across Africa Across Africa, stigma makes epilepsy difficult to be treated. In South Africa for example, The South African Health News Service on September 10 2014 reported the story of Lusanda Ngwenya, 13, then, who was an epileptic patient that was rudely treated by relatives and friends.
“I don’t have many friends. Some kids don’t even want to play with me because they believe they can (catch) epilepsy. Living with epilepsy at this age is a challenge because a few people may accept you, but the rest will discriminate against you. Living in a rural community where people still believe in culture and traditional medicine, it’s a challenge,” Ngwenya had said.
The Wellcome Trust Research Programme, Kenya, in 2011, found out in a research it carried, saying that 75 per cent of people suffering from epilepsy in Kilifi of Kenya don’t seek medical treatment.
“Community people have cultural beliefs that epilepsy is caused by witchcraft, evil spirits and curses,” said Dr. Caroline Kathomi, coordinator of epilepsy studies at the KEMRI-Wellcome Trust Programme, “Because of the way epilepsy presents itself, people think you are possessed by a spirit, and so we need to raise awareness of the real causes”.
Sieving Myths from Facts In a public presentation with the title “Epilepsy Truths and Myths: Education is the most powerful weapon”, Dr. Marcelo Lancman, Medical Director of the Northeast Regional Epilepsy Group in New York, New Jersey and Connecticut discussed epilepsy myths and truths.
1. Myth: Epilepsy is contagious. Witnessing someone frothing at the mouth still produces fear in many and some persons fear being contaminated if they touch the saliva or the person who is seizing. There have been reports coming out of Africa in which this is still held as a belief and persons who are seizing are avoided. Fact: It is absolutely NOT contagious.
2. Myth: You must put something in the mouth of someone who is seizing so that they will not swallow their tongue.
Fact: Many teeth have been broken and even fingers have been lost because of this myth. There is even the real danger of choking if that which is forced into the mouth of the person having the seizure breaks off. There is absolutely NO need to put anything in the mouth when someone is seizing.
3. Myth: Someone who is having a seizure should be restrained or pressed to the floor. Fact: There is absolutely No need to restrain someone having a seizure. In fact, if you press down on the chest during the seizure, you might limit the air that can come into the lungs and you could cause death or injury. Do make sure the person is safe and away from harmful objects and try to make sure there is something soft under her/his head and is rolled onto her/his side.
4. Myth: You can’t die from epilepsy Fact: Unfortunately this is not true. Sudden Unexpected Death from Epilepsy (SUDE) is a very real concern. Having a very prolonged seizure (status epilepticus) can lead to death. Scientists estimate that thousands die as a result of SUDEP every year. Doctors recommend that safety measures include: taking your anti-epileptic medications very regularly, sleeping enough time every night, avoiding alcohol and drugs. Some parents choose to have a baby monitor to be able to hear if their child is having a seizure. There are also mattress pads that pick up movements and sound an alarm, oxygen monitors and pillows to avoid suffocation.
5. Myth: Very few people have epilepsy and I don’t need to worry about it.
Fact: Not true. One out of every 26 people especially in the US has epilepsy. More people have epilepsy than with autism, Parkinson’s, multiple sclerosis and cerebral palsy, combined!
6. Myth: Modern science has produced so many new medications that epilepsy is now a solved problem.
Fact: Unfortunately, this is NOT true. There are a significant number of patients who do not respond to the medications and continue to have seizures. Science is working hard to develop newer and better medications, surgeries, and other treatments but we’re not quite there yet. 7.Myth: Only kids get epilepsy Fact: You can develop epilepsy at any age. In fact, a growing number of new epilepsy cases are found in the elderly population (often as a result of another medical problem: stroke, heart condition).
8. Myth: People with epilepsy are disabled. Fact: This is NOT true. Many people with epilepsy are quite able to do very well in their academic careers, work, and life. Just to name a few very visible and successful people living with epilepsy: Supreme Court Judge: John Roberts, musician Neil Young, author Agatha Christie, President Theodore Roosevelt, etc.
Causes and ‘cure’ The Wellcome Trust Research Programme argued that epilepsy affects over 50 million people worldwide with over 80 per cent living in resource-poor settings. “Epilepsy is a brain disorder that early detection and treatment with the right diagnosis medication, couple with the right dosage, positive attitude, exercise and eating right, may be cured and the patient can live a normal life,” Asemota said.
The source said that up to 70 per cent of people receiving treatment for epilepsy, such as the anti-convulsant drugs Phenobarbital and Carbamazepine, eventually become free from seizures.
“But in towns like Kilifi the main problem is getting people to seek treatment in the first place, due to the many myths and stigmas associated with the condition,” reported Wellcome Trust Research Programme.
Education Intervention Through education intervention more people can become aware that epilepsy is not an infliction by any Gods, fate, hereditary, witchcraft...
In Africa, a gap from 75 per cent down to 50 per cent can be achieved through education in making people to understand the truths about epilepsy.
“In 2003, the treatment gap was 86 per cent and we are now at 75 per cent due to the epilepsy clinic in Kilifi. Our intervention should bring that gap down as low as 30 per cent. Once we improve the drug supply and knowledge of epilepsy this should all combine to reduce the treatment gap even further because when people see the benefits, they are willing. The key is education, education, education,” concluded the research.