NO one ever went to the Nyekas’ home without invitation. It was known the family had a fierce big dog locked up in the backyard to keep to it at bay, so it would not harm anyone. Like Mr and Mrs Nyeka always said, you never knew when it would break out of its kennel.

What everyone in the village remembered though, was that the Nyekas had a daughter that was aged six. But, already four to five years had gone by since anyone last set eyes on the girl. Her mother said her daughter had been so frightened by the dog, she asked to move to her grandmother’s home in another district.

It was not until a psychiatry camp came to town with some education radio series, that the big fierce dog was finally released. And behold, the dog was actually the little girl.

All along, the parents were ashamed of her, thus tucking her away in the backyard, because of the case of her epilepsy. This is a true story, but one that carries on throughout this country and in most of the developing world. It is the reality of epilepsy as well as most mental illnesses.

Epilepsy is a long-standing problem of the nervous system, seen as a series of convulsions (seizures) during the life time of the person suffering it. Normally, the activities of the brain happen through electrical activity, but in epileptic persons, this electrical activity temporarily gets disorganized resulting in convulsions.

These affect a person’s awareness, movement or sensation. Often young children, six years and below, tend to get convulsions when they have fevers. But, this does not mean they have epilepsy. Yes, epilepsy is not a mental illness.

Origin
The word epilepsy originates from ‘epilepsia’, which means ‘to be possessed’. This came about because, originally, it was thought people who had epilepsy were demon-possessed. Epilepsy came also to be known as ‘the falling disease’ and in many African settings it is still called ‘the burn disease’.

The Roman emperor Julius Caesar had epilepsy, which led Romans to treat it with more respect. Those affected drank the blood of strong men in an attempt to heal themselves.

Beliefs about epilepsy and its management are influenced a lot by the environment in which a patient finds him or herself. In Africa, epilepsy is associated with possession by evil spirits, witchcraft or poisoning. It is believed by many to be contagious, which puts the patients at risk of discrimination and stigmatization.

Extent of epilepsy
Epilepsy is the most common long-standing nerve system disease in Africa. According to the ‘World Health Report, 1997’, more than 40 million people worldwide suffer from different kinds of epilepsy. Around 85 percent of these people live in developing countries, which comprise much of Africa.

The incidence of epilepsy is generally higher in the very young and the older ages. It, however, affects people in all nations and of all races. If left untreated or poorly treated, it can gravely affect the mental and social development of the patient.

How to cope
The diagnosis of epilepsy has several effects on patients and their families. Social stigma, prolonged use of medications, marital problems, depression, unemployment, selective sports participation, loss of employment and loss of driving privileges are only some of the issues that they almost usually face.

However living with epilepsy does not have to be tormenting. The first thing that people need to understand is that epilepsy, in 70 to 80 percent of cases, is treatable. It can be controlled enough for the patient to live a normal life.

Unfortunately, 60 to 90 percent of people with epilepsy may not receive the treatment they need. They are, therefore prone to leading sad lives due to the disease.

Causes
In African children, the commonest causes of epilepsy is brain injury at birth. It can also be brought about by infections like meningitis.

In adolescents, the use of drugs and alcohol is becoming an increasingly common cause while in adults the commonest cause of epilepsy is tapeworms got from eating under cooked pork. This tapeworm travels to the brain and makes itself a home there, disrupting normal electrical activity of the brain and resulting in repeated convulsions.

Other causes of epilepsy may be head injuries, tumours and diseases in the brain. However, there are also sheer genetic or inherited conditions of epilepsy. 

Types of epilepsy     
Generalised seizures or grand mal epilepsy: There are several types of epilepsy although this type is most known by the general population. It is characterized by convulsions, where the person falls and experiences vigorous shaking of the whole body.

This is because it affects all or most of the brain at once. A person, who has this type of seizure usually loses consciousness and does not recall anything about them at that time. The person typically loses control and falls to the ground, loses consciousness, develops stiff muscles or jerking (involuntary) movements; stops breathing for a few seconds; gets a rigid jaw and may bite their mouth or tongue; may pass urine or stool and after regaining consciousness may be confused or remain drowsy.

Tonic seizures

People with this type of seizures become completely stiff and may fall to the ground.

Clonic seizures

Patients, who suffer this kind, usually experience twitching continuously, but do not fall to the ground and do not become stiff.

Atonic seizures

During an atonic seizure, the muscles become floppy and the person may fall forwards to the ground.

Absence seizures

A person with this type of epilepsy may lose consciousness or more awareness for a few seconds and may just look as if they are daydreaming. This type does not involve falling down or experiencing involuntary jerking movements. This kind of seizure is most common in children and can continue into adulthood.

Some children have several episodes during the day so that it affects their academic performance and teachers may refer to them as ‘day-dreamers’.

Simple partial seizures

This is when one small part of the brain is affected. If you have this type of seizure you may continuously experience one or more symptoms including: a sense of "déjá vu" (the feeling of having done something before) or a "jamais vu" sensation (feeling like something familiar is new); flashbacks; an intense feeling of fear or joy; a funny taste or smell; numbness or tingling; strange movements; and/or seeing flashing lights or coloured shapes. (In the picture: A generalized tonic clonic seizure. Here the whole brain is affecting from the beginning. In (a) there is a cry and loss of consciousness, arms flex up then extend in (b) and remain rigid (the tonic phase) for a few seconds. A series of jerking movements take place (the clonic phase) as muscles contract and relax together. In (c) the jerking is slowing down and will eventually stop. In (d) the man has been placed on his side to aid breathing and to keep the airway clear)

Complex partial seizures

This type of seizure affects a larger part of the brain and often lasts longer than other types of epileptic seizure. If you have a complex partial seizure you may be only partly conscious, and you may not recall what happened. Symptoms are lip smacking or chewing movements; rubbing, stroking or fiddling with your hands; and looking from one side to another in a confused manner.

Secondary generalised seizures

Secondary generalised seizures start as a partial seizure (either simple or complex), before developing into a generalised seizure.

Epileptic fits
Many times the convulsions are unprovoked – meaning that they start without any trigger. However, a number of triggers have been identified including sleep or its deprivation, flickering lights like television and disco lights, noise, menstruation, stress and fatigue, missing meals, and consuming alcohol or drugs.

Diagnosis and treatment
If you or someone you know has had even one fit in a year or has any of the symptoms highlighted above, they need medical attention. They ought to explain to their doctor what  they are experiencing.
One of the tests the doctor does is an electroencephalogram (EEG), to assess normalcy of the electrical activity of one’s brain. If the doctor is convinced one has epilepsy, he or she will try to find out the cause of seizures, in order to start the patient on medication to seizures.

Causes like pig tapeworm, alcohol and drug use can be reversed. It is in no doubt recommended for a patient to taken the medication exactly as prescribed. The latter also ought to have an ‘Epilepsy Chart’, which is a book where to record the date and time of his or her fits and the length they take.

This helps to classify the disease. It also makes it easier for the doctor to monitor, especially as regards the effect of the treatment on which the patient is.

As an epileptic, there are things a patient out to take into account carefully. Mostly, they must avoid swimming at all times, when they are without a life jacket. Patients ought not to drive vehicles, unless they are sure they may not have had a seizure in a space of at least five years.

All the same, one’s doctor has to permit and certify that the patient is well placed to drive. In all cases, however, the patient must avoid all activities or incidents that have possibilities of triggering seizures or fits.

Dr. Miriam Laker Opwonya-Oketta Coordinator ARV-Kaposi’s Sarcoma Study
Infectious Diseases Institute, Makerere University
drmiriaml@yahoo.co.uk