Urbane, charming and exquisitely polite Nasiru Adam (not real name) walked languidly into a 2000-capacity lecture theatre with his lithe, athletic and spartan frame to catch a glimpse of what was in the offing for the day. It was the last minute preparation for the second-semester examination in his 100 level at a first generation university in the North-western part of Nigeria. As usual, everyone had gathered for the final review of the topics already treated in the semester.  To Adam, the day looked good. His comportment was decorous and dignified too. His face sparkled like a piece of Chinaware. He had no inkling of what was in store for him. So, as everyone waited patiently for the arrival of the no-nonsense lecturer in charge of History 10I (Historical Methodology), he moved from one end of the expansive hall to the other, exchanging pleasantries with friends and acquaintances. The lecturer arrived and commenced the business of the day. Expectedly, silence enveloped the hitherto noisy atmosphere. No one wanted to miss any information that would aid in passing the mandatory course.   

Midway through the session, the unexpected happened: Adam had a sudden epileptic seizure. His head hit the floor with a loud thud.  He let out a frightening scream, jerking and foaming at the mouth.  Confusion and fright seized the gathering. There was pandemonium. No one seemed to be in charge except the lecturer. When he finally got over the crisis, you could see in him a feeling of utter embarrassment. Why Adam?  Everyone kept asking. His subdued mien evoked sympathy.  

 Myths and misconceptions

Apparently, Adam was only unfortunate to be a victim of people’s ignorance and general misconception about epilepsy. For so long, there have been many unfounded myths and traditional beliefs about the cause of the strange condition. While some believe it is an affliction from the powers beyond as a punishment for certain sins, others hold the notion of it being a spiritual attack from enemies. Sometimes, they say, it could be inherited from the family. On the extreme side is the misinformed opinion that it is contagious.   

A renowned Ifa Priest, Chief Yemi Elebubon, speaking with Sunday Sun, explained the Yoruba mythology about epilepsy. He said: “Sometimes, it is inherited and in another way, it could be the handiwork of the enemies. When they invoke the spirit, it travels in the wind. And when it reaches the person, it harms the body.”

Either way, he maintains, there are effective herbal remedies and spiritual solution to the illness. His words: “Whether it is natural or not, there are traditional remedies for it.  One way to treat it is to drive out the spirit and correct the wrongs in the body. The other alternative is to go for herbal therapy. The only problem with the traditional herbal remedy is that the treatment takes a long time before you can get rid of epilepsy. And it is not just one herbal medicine that can cure it.”

This position is at variance with orthodox medical knowledge. Dr Oyekanmi AK, the Chief Consultant Psychiatrist, Neuro-Psychiatric Hospital, Aro, Abeokuta, disagreed with the traditional belief in an exclusive interview with Sunday Sun. While dismissing some of the general misconceptions about the cause, the cure and management of epilepsy, she stressed that it is a disorder of the brain. She explained: “Epilepsy is one of the most misunderstood disorders of the brain. It is a disorder surrounded by myths and misconceptions. Contrary to the popular myths that it is a spiritual problem, epilepsy is a brain disorder. The brain is made up of cells called neurons or nerve cells. Each nerve communicates to the other through small electrical signals and chemicals called neurotransmitters. What happens in epilepsy is that there is an abnormal discharge of electrical current, which disrupts the normal functioning of the brain. When that abnormal discharge becomes recurrent, we call it an epileptic seizure.”

According to Oyekanmi, epilepsy can manifest in different ways, depending on which side of the brain is affected by the disorder. She went on: “The manifestation of the different types of seizures depends on which area of the brain is having a problem. For example, if there is an abnormal discharge in the part that controls movement in the right upper limb, the patient can be having repeated jerking of the right upper limb without the involvement of the whole body. If the abnormality affects the brain area controlling internal organs of the body like the heart, respiratory system or the gut, the patient can have what we call autonomic symptoms like feeling hotness or coldness in some parts of the body. The patient may feel cold in the legs and hot in the body at the same time, or feel like something is rising in the stomach.    

“The only type of epilepsy our people know is the one that affects the whole of the brain whereby the patient falls down and experiences a vigorous involuntary movement of the limbs and the trunk with the stiffness of the muscles. Sometimes, the patient might urinate on himself or herself. The patient may be foaming at the mouth because there is a contraction of the muscles of the throat. This one is called grandmal epilepsy. Apart from this, there are several other types of epilepsy, depending on that part of the brain where that problem is. And they could manifest at any time of the day, even in sleep. Some types of epilepsy can manifest in a bizarre way. For instance, frontal lobe epilepsy may manifest while you are sleeping. In such a case, the patient can be having pelvic thrust while asleep in which the pelvis will be moving sideways resembling a sexual movement. If you don’t know, you may say this person is having sex with a spiritual partner. Epilepsy does not necessarily have to make you fall down, jerk or lose consciousness. It can manifest in different ways. One of the hallmarks of manifestation is that it is episodic in nature. If you have a child or a friend who, you notice, sometimes manifests some abnormal behaviour for just a few seconds or minutes, and then he/she is back to normal, maybe you should suspect epilepsy and seek medical evaluation. Again, if you are talking to someone, and the person stares absentmindedly, it may be an epileptic symptom.”

The reality in this contemporary time is that virtually all dreaded diseases are preventable, treatable and manageable. With the use of latest gadgets, it is now much easier to dissect the physiology of the human parts with precision and exactitude. For proper diagnosis of epileptic seizure, according to Oyekanmi, a patient may be asked to do some certain tests, including EEG, CT Scan and MRI in extreme cases.  Her words: “Your doctor may ask you to go for an EEG, which shows the pattern of electrical waves in the brain. You may also be asked to do some blood tests just to be sure that the cause is not due to deficiencies in the blood or infections. Sometimes, they may ask you to do a CT scan or MRI. But MRI is very expensive.”

Ironically, the actual cause of epilepsy still remains largely unknown even with the use of sophisticated machines. “In over 60 per cent of cases, the cause is not known. We call those ones idiopathic epilepsy. If it occurs in early childhood, it may be due to some birth trauma, birth asphyxia due to poor obstetric practice or brain infections. If it occurs in adulthood, it could be caused by head injury from accidents, infections or a brain tumour . If an adult is experiencing it for the first time, most of the time you can really pinpoint where the problem is,” Oyekanmi stated.

The pains and the agonies

Epilepsy is one of the major health challenges that have for so long generated anxiety, confusion and sometimes outright disillusionment among the sufferers and their relations.    

Much of this stems primarily from the deceits and unwholesome practices associated with traditional herbal treatment which is mostly the preferred option by the illiterates. The experience of Mrs. Folake, mother of an epilepsy sufferer, tells the story. While on a routine medical check-up at the Child and Adolescent Ward, Neuro-psychiatric Hospital, Aro, Abeokuta, Ogun State capital, she spoke with Sunday Sun. Her narrative hurts. It evokes emotion, sympathy and a deep sense of loss. Some three years ago, when her seven-year-old daughter first experienced epileptic seizure, virtually everyone around declared medical intervention as a no-go-area. They unanimously held that it was a spiritual attack.  So, she opted to patronise spiritualists, who deceived and extorted money from her family. In the ensuing struggle, her husband abandoned her to care alone for the child, having spent a fortune.

She narrated her ordeal: “God is my strength. He has been my pillar of support since my husband abandoned me with my seven-year-old daughter because of her epilepsy. It all started about three years ago on a Thursday afternoon after she returned from school. She was in the living room with her other siblings when I heard her scream. I rushed in to find out what had happened to her. But shock and disbelief greeted me, as I found her on the floor, jerking and foaming at the mouth. We thought it was just a mere happenstance. But exactly a week after, another episode repeated itself. This time, it happened in school. When the head teacher called me that my attention was urgently needed, my heart raced and skipped several times before I got to the school. That was how it became a recurring episode to the extent that we were always expecting it to happen every Thursday. After a while, it became a Monday-Monday-episode. So it went on and on until we embarked on the journey into the wilderness, groping for remedy.”

She continued: “Naturally, we were at a loss. We didn’t know what to do. Everyone told us it was a spiritual attack, which could only be handled by traditional healers. With that palpable anxiety, we approached a traditional herbal healer, who told us that the attack was aimed at truncating the girl’s ambition and make her illness a drainpipe for us as parents.  There and then, he consulted the Ifa oracle and prescribed a sacrifice of a black male goat to appease the enemies and ward off the evil. Assuring that there would be no further repeat of her seizure episode, he gave us some herbal roots (Agunmu), a five-litre gallon of black concoction (Agbo), and a black soap for a seven-day spiritual bath. For all of these, we paid a bill of N75, 000. And we followed religiously all instructions pertaining to the use of the herbal prescriptions. But there was no noticeable reduction in the frequency of her seizures.”  

“Everywhere else we went, we got the same answer. We made sacrifices of money, goat, clothes, red oil and so on, but all to no avail. As Christians, we attended vigils and miracle crusades, and we observed endless fasting. One day, my uncle, who is a medical doctor, heard about it and enlightened me about epilepsy and advised that we seek an immediate medical intervention without any further delay. By this time, my husband had withdrawn his support, believing that epilepsy is incurable and that the sufferers would ultimately die of the illness. I cried, I wailed and I felt let down. But he refused to have a change of mind. Now, I carry the burden all alone with the little money I make from my petty trade. I spend no less than N6, 000 monthly on drugs. But my joy is that since she has been placed on her drugs, the seizure has been controlled. Moreover, doctors have assured me that she would overcome the condition if we adhere strictly to her prescriptions over some period of years.”  

Mr. Abayomi also shared the pains and agonies he went through in the course of his long search for the supposed cure for epilepsy condition of his son: “Until August 2016 when my son, 11, started having recurring seizures, I knew little or nothing about epilepsy. The day it happened, I felt the world had come to an end. My immediate conclusion was that it was a spiritual attack from my enemy who could not get at me directly. And so, I didn’t bother at all to give medical intervention a trial. Instead, I opted for spiritual solution, which I later discovered to be a ruse.  The one I could recollect rather painfully is the case of a herbal healer who claimed to have invented a potent cure for seizure and defrauded me of N120,000 in one week. I paid in three instalments of N40, 000. At the end of the day, he only gave me a black herbal powder to be robbed on the head and some herbal preparations. We used it as directed but there was nothing to show for the efforts.”

“I became livid and I went back to the old man to demand an explanation for the herbal prescriptions’ inefficacy. I also demanded a refund of my money. But he had no answer. Right there, I declared generational curses on his children and children’s children. And I know it will come to pass,” he fumed.

Following the experience, Abayomi said he had to make a U-turn to pursue orthodox treatment, which, according to him, has brought tremendous relief to the condition of his boy.  

While berating herbal practitioners for defrauding unsuspecting individuals concerned, Oyekanmi warned against the consequences of delayed treatment, adding that it could lead to irreparable damage of the brain. She said: “The problem is that we spiritualize everything. And in most cases, conmen cash in on this and tell you what you want to hear, like saying you were afflicted by a witch in your family or village. Many have been defrauded of millions of naira. In most cases,  orthodox hospital is usually their last bus stop when they have tried all other means and failed. You hardly see somebody presenting the case at an early stage except if the people around that person are educated and well informed about epilepsy. Even then, it would have drained them emotionally and financially before finally coming to the hospital.”     

 “The consequences of delayed treatment can be very bad, especially for children. There are some herbs that have medicinal values. Yes, some orthodox drugs have been synthesized from these herbs. But even if there are herbal mixtures, have they been subjected to thorough clinical trials? Has the appropriate dosage been scientifically determined? Has it been tested in the laboratory? What quantity is safe for human consumption? Some herbal mixtures can even form dangerous chemicals. That is why we don’t endorse traditional medicine without scientific proofs.  Science does not lie. It is not trial and error. It can be replicated,” she stated. 

More tales, more woes

However, some concerned patients who spoke with Sunday Sun at the Neuro Psychiatric Hospital, Aro also complained that they had not yet achieved the seizure-free target, despite taking their prescribed drugs. A distraught sufferer, who identified himself as Abass Olasunkanmi, expressed his worries and frustration over his recurring seizure. His words: “I have been taking my medication as prescribed by the doctor, but I still experience seizure episode once in a while. And this keeps me worried sometimes. My doctor has changed my prescription a couple of times to see if there would be a more effective control, but there is only a slight reduction in my seizure frequency. But I believe that, one day, I will get over the condition.”

Asked whether he has had any embarrassing experience in his seizure episode at any time in the past, he answered in the affirmative in a philosophical way. “Each episode is itself an embarrassment. The only difference is where, when and how it happens. If you have the episode in your home, it is no problem anymore because everybody is aware of your condition already. But if the seizure grabs you in the public, as a human, you will feel embarrassed, traumatised and disillusioned. One such unpleasant experience I wished it never happened was the day I had a seizure during our social night in my SSS 2. I was in boarding school then. And we used to have social night every end of the month. That day, I was unusually very excited as if there was no one before it. But I opened my eyes only to find myself on the bed in the sick bay,” he said in a bemused tune .  

Oyekanmi, responding to Abbass’ plights, insisted that epileptic seizure would be effectively controlled if the sufferers adhere to their drug prescription. She further clarified that seizure occurrence may continue until a patient’s prescription reaches his or her effective dose. “There are fantastic drugs that will help control or eliminate your seizure. If you adhere to your drug, the seizure will be adequately controlled. But if you have not reached the therapeutic dose, the drug may not work well. A lot of times, the patients are not regular on their medication,” she submitted.

However, Sunkanmi, a 300 level student of the Osun State University, who told Sunday Sun that he had been given a clean bill of health after being seizure-free for three and a half years, expressed his pleasure and the great relief for the turnaround of his health condition. “I don’t want to think about it. I can’t express how I felt when my doctor told me that I could take a drug holiday, which lasted for a couple of months before I was eventually told to stop it. I must thank my parents for their untiring care and support. They were always there for me. They spent their fortune to be sure that I live a stigma-free life. At a point when I threatened to stop the drug, they persuaded me, they comforted me, they gave me hope and confidence that I would overcome it. And I did truly overcome. I give praises to God. I also owe some of my friends a debt of gratitude. They were always there for me,” he said gleefully.

Cases have been reported of some patients who went out of their ways to combine traditional medicine with orthodox treatment out of desperation. The consultant psychiatrist frowned at the practice and warned of the dire consequences. “We don’t endorse combining traditional medicine with orthodox. It is either you adhere strictly to your orthodox medicine or go traditional, bearing in mind the consequences. It is up to you, if you want to go traditional. But you are taking a big risk. I want to advise that you don’t take that risk,” she declared.

She also allayed the fears of the possible side effects of prolonged use of drugs. “A lot of people often say that orthodox medicine may have side effects on the patients. The truth of the matter is that there is no drug without side effects. The side effects of these drugs are exaggerated. And the side effects are mostly unnoticeable and much more tolerable than the consequences of a badly managed epilepsy. If a child is having epilepsy and it is not controlled, it can affect the child’s learning capacity and self-esteem. So, what you lose by not managing it is much more than what you think you may gain by not using orthodox medication.”

Social stigma

One of the major challenges of epilepsy is the social stigma. Stigma prevents people from seeking the right help on time.

 Again, based on the general belief that epilepsy is contagious, many people are always reluctant to give help when there is an attack. It will be recalled that this newspaper had recently reported a sad incident of an epilepsy sufferer who had a seizure while cooking and fell into the fire, resulting in first-degree burns. This is based on the common misconception, particularly among the unlettered, that physical contact with the saliva of a sufferer can predispose someone to the illness.

To avoid such an ugly incident, Oyekanmi stressed the need for public enlightenment on the safety of individual sufferers. She further outlined precautionary measures that need to be taken to ensure the safety of the sufferers. “Epilepsy is not contagious. When you see somebody having the convulsive type of epileptic seizure, just make sure that the person is not around something that can injure him or her. Hold the person, but don’t over pin him or her down. Turn the person to the left side so that the patient will not aspirate. If there is a nearby clinic, quickly rush the person there so that he or she can be given medicine that will abort the episode,” she advised.    

Access to drugs

It was lamentation galore at the Pharmacy Department of the Neuro-psychiatric Hospital, Aro, where most patients complained of the prohibitive cost of anti-convulsant drugs.

A 56-year-old woman who spoke with Sunday Sun said that her monthly bill had gone up by more than 100 per cent.  According to her, the drug, which she bought for N8,700 in December 2016, now costs N10,500.

Another mother of a six-year-old girl literally burst into tears when she got a bill of N14,000 as against N9,000, which she paid last December for the same medication. The situation is further compounded by the non-availability of the drugs in most standard pharmacies outside the hospital. She lamented the insensitivity of the Federal Government to the plights of the ordinary people and appealed for immediate intervention.

“Please, help us appeal to the Federal Government to make the drugs accessible. It is not easy for us to cope with the prohibitive cost of these drugs. But because of the necessity attached to them, we have to go out of our ways to purchase the prescribed medications. We beg them in the name of God, they should come to our aid,” she said. 

One of the health officers who did not want his name in print told Sunday Sun that the price increase was as a result of the dwindling exchange value of the naira against the dollar, saying that most of the drugs were imported from the UK.

Although there is no accurate statistics on the actual prevalence of epilepsy, Oyekanmi put the incidence figure in Nigeria at five to six in every 100 persons. And for majority of these cases, she added, the actual cause of the illness often remained unknown.  “The prevalence rate of epilepsy is higher in developing countries. In Nigeria, it affects five to six persons in every 100 individuals. And there is a likelihood of under reporting because people here conceal it because of stigma.

The way out of such ignorance, Oyekanmi suggested, is for the relevant authorities to ensure sustained public enlightenment on epilepsy as a way to end the social stigma attached to it. “Everyone should be educated on epilepsy. Nigerian moviemakers portray epilepsy in their movies as a punishment for wrongdoing or an affliction from an angry enemy. Teachers should also be educated. If a student is not doing well in class, they should try and find out the primary cause of his or her poor performance. There is a particular type of epilepsy called absence. In this type of seizure, a child is just staring and the teacher does not know. And this affects the child’s understanding and learning.  Epilepsy can happen to anyone; no one is immune. Epilepsy does not preclude you from achieving your potentials,” she admonished.

Part of the reason for the dismal plight of epilepsy sufferers and the challenge of social stigma they have had to grapple with is the absence of civil society groups to drive public campaign and enlightenment against the misconceptions about the illness. This is further compounded by the seeming passivity of the government on some of the concerns raised by the health professionals. Epilepsy is a serious health issue the relevant authorities have to urgently look into, to relief the sufferers and their families the agonies and pains they have been passing through.  Ade, whose son had recently overcome his seizures told Sunday Sun.