Keywords: Epilepsy, stigmatization, seizure, generalized seizure, partial seizure, ictal, postictal, Nigeria.
Epilepsy and Stigmatization in Nigeria. What is epilepsy? And what factors bring about epilepsy in Nigeria? What is stigmatization? How do Nigerians stigmatize people with epilepsy? Can stigma be prevented?
Many Nigerian believe that epilepsy is contagious and can be spread through the saliva of someone who has the disease. These are some of the myths surrounding epilepsy in Nigeria. For these reasons, the disease is held in secrecy by those who suffer from it.
What is epilepsy?
Epilepsy is a chronic neurological condition that is made up of recurrent seizures. It can also be accompanied by involuntary movements from the body, be it parts or entire body. There could be reduced consciousness or the entire loss of it. And there could also be loss of control of the bowel and bladder functions.
Seizures are actually excessive electrical discharge in some brain cells. These are abnormal discharges. They disrupt the normal electrical messages among the brain cells, temporarily, and disturbs the normal function of that brain area. So muscle, sensory and even mental functions are either stopped or become abnormal, temporarily.
Types of seizures:
Here the seizure pattern starts to generate the electrical activity from a small area in the brain. And the electrical activities remain in that specific area.
These seizures begin at different parts of the brain at the same time and spreads throughout the brain areas.
There is the prodromal stage:
Here events happen days or hours before the seizure. These events sensitize the person that soon a seizure will occur.
It can be a warning sign of an impending seizure or actually the beginning of a seizure.
This is the actual seizure. How it physically presents on the person, will depend on the type of epilepsy.
Post ictal stage:
It happens immediately the seizure ends.
The inter ictal stage:
This is in between the seizure stages. Here, the person is usually seizure free.
Types of epilepsy.
This main classification of epilepsy has subtypes that include generalized tonic-clonic, absence, myoclonic, clonic, tonic and atonic.
Also this other type has subtypes such as simple partial, complex partial, partial seizure with secondary generalized.
Causes and risk factors for epilepsy in Nigeria.
In most cases of epilepsy, there is no known cause. And in Nigeria, 55% to 60% of cases cannot be traced to a cause.
Inheritance of genes has a place in some cases of epilepsy. So it can run in the family.
Brain infections can be risk factors for epilepsy. The infections include meningitis, encephalitis, brain abscess, tuberculosis, HIV infections, etc. These conditions are quite prevalent in Nigeria. So not being immunized is a risk factor.
Blows and other traumas to the head are risk factors. Also conditions that can prevent adequate supply of oxygen to the brain cells are also risk factors.
So due to poor antenatal care during pregnancy and poor delivery services during child birth, epilepsy can occur. Issues like having a narrow passage for the baby during delivery, is a risk factor. Also, the inappropriate use of forceps during delivery is a risk. All these cause lack of oxygen to the brain areas, especially to the hypocampus and amygdale. Nigeria has a high rate of poor antenatal and delivery services. This is most of the time due to the women not accessing the services that are available. And most women refuse planned cesarean operations during child delivery. This is because they want to deliver like the “Hebrew women.”
There is also high rate of road traffic accidents in Nigeria. And with the insecurity issues in Nigeria, incidence of violence is high.
Other issues in the brain:
This will include tumors and other abnormal growths in the brain.
These are conditions that occur due to the abnormal development of the brain. They include autism, etc.
Other medical conditions:
They include fevers, strokes, dementias, etc.
Mental health conditions:
These include depressive disorders. Depression can lead to damage to brain cells and thus be a risk to seizures. Also the abuse of certain substances like alcohol, etc. can predispose to epilepsy.
How does epilepsy present?
The way epilepsy presents actually depends on the type. Since there are different types, the presentations differ.
The generalized tonic-clonic:
Here, the person presents with loss of consciousness, falls to the ground and starts to convulse or jerk in a tonic-clonic manner. After the jerking episode, which normally lasts about 1 to 3 minutes, the person goes off to sleep. A seizure lasting 5 minutes or more is called a status epilepticus, which can be quite dangerous. After a short or long sleep, the person wakes. During the seizure, there could be saliva or foam from the mouth. And there could also be defecation or urination during or after the seizure.
There is a brief loss of consciousness for a few seconds. And there may or may not be other associated symptoms. These associated symptoms include standing motionless and staring blankly into space, repeated unprovoked blinking of the upper eyelids. This brief loss of consciousness actually stops the person in the track of the activity that he was doing. Once it is over, the person continues with his normal activity unaware of what actually happened. There could be many of such absence seizures in one day.
This is made up of unorganized jerking movements that occur briefly. There is no loss of consciousness and the person feels them like electric shocks. When these electrick shock like seizures occur, like on the upper limbs they may cause the person to drop whatever was in the hands. These unexpected muscle contractions occur more often at the early morning hours.
There is a type of myoclonic seizure called infantile spasm. It happens to babies within the 1 to 2 years of age. The presentation comes as head nodding, body or limb stiffness. The seizure lasts for 1 to 2 seconds and can occur as frequent as 50 to 100 in one day. Within the attack the baby can cry or laugh.
Here there are jerking rhythmic movements on both sides of the body. This occurs when the seizure starts from both sides of the brain. The person falls, may or may not be aware of what is happening. But it can also only affect one side of the body or limb if the problem is from one side of the brain.
There is sudden stiffness of the body and limbs. If the person is standing he or she will fall. But it occurs more during sleep. It usually lasts for 20 seconds. Full awareness maybe present or it may be partial awareness. At the end of the seizure, the person may be confused or may sleep. It may occur many times in a day. Sometime the presentation is focal, affecting only one side of the body or limbs.
Suddenly, the person’s muscles loose strength and become limp. When this happens to the muscles on the legs, the person falls, if standing. Another name for this is drop attack. It lasts only for a few seconds. The person has partial loss of consciousness. If it is localized at one part of the brain, then only one part of the body is affected, like the muscles of the neck. And in such a case it is only the head that will drop.
Simple partial seizure:
This can present as muscle issues with jerking, stiffness, etc. It can also present with problems within the 5 senses. So there could problems with visions, hearing, smell, taste and touch. The person is usually aware of the environment. Thus the person may be saying things no one understands. He or she could be crying or laughing or feel afraid. There could be tingling sensation on the limbs, perceiving odd odor. The stomach may be churning and the heart may beat fast. A familial environment may seem strange. Aura occurs in this type of seizure.
Complex partial seizure:
Awareness is impaired. It may present with lip smacking fidgeting with fingers, like the bed sheets or moving about aimlessly in the room. This is called automatism.
Focal seizure or partial seizure secondary generalized:
Just as the name implies, the seizure starts out like a partial seizure, then goes into a generalized tonic – clonic seizure. This means that the brain issue starts at one part of the brain, then involves the whole brain.
Epilepsy and stigma in Nigeria.
Aspects of stigmatization:
Stigmatization has 3 components. The first is negative belief others have about certain groups of people. This is called stereotype. Then the second component is adding an emotional aspect to the negative belief. It is called prejudice. The third component is putting that negative belief and emotions into actions against that group of people. This is called discrimination.
So when it comes to people living with epilepsy in Nigeria, majority of Nigerians who are free of epilepsy stigmatize them. In a research in Enugu about 92% of people living with epilepsy were stigmatized. Majority of Nigerians have negative beliefs about them. They believe that those with epilepsy are possessed by evil spirits. Also see them as having mental illness. And there is a belief that the saliva of those with epilepsy can spread the disease. So in Nigeria, those living with epilepsy are stereotyped.
Those living with epilepsy are not liked by the majority of Nigerians. Others are afraid of them and even and afraid of sharing eating utensils because that their saliva is contagious. Thus people living with epilepsy in Nigeria face prejudice.
People living with epilepsy in Nigeria are denied many of their rights. They are denied housing, jobs, driving etc. Above all, they find it difficult to make friends or marry because of the negative beliefs. So they face discrimination in Nigeria.
Effects of stigmatization:
Due to the stigma this group of people faces, they live their lives mainly in secrecy. Some parents hide their children at home and refuse to allow them go to school. For some who end up in school, they can face bullying from teachers and students. These children may not be able to access treatment because their parents do not want others to know about their conditions. Even for those who do receive treatment, stigma can predispose treatment compliance and resistance.
They are unable to get proper jobs and thus they miss out on their full potentials. Life to them, does not have its full quality.
Fighting stigma in epilepsy:
This requires education for those who suffer from the disease, their family members and their friend. Their teachers and fellow students also require being educated on the matter.
Proper factual and comprehensive information needs to get to these sets of people. Education will go a long way to debunk the myths and other misinformation passed down from one generation to the other. And can prevent risk factors to epilepsy.
Advocacy is also very important. So those who have been treated should come out to the public to talk about themselves and how they have received help. This will go a long way to encourage others with the disease.
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