epilepsy and impact on the children development

8/14/2019 Epilepsy and Impact on the Children Development

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EPILEPSY AND THE IMPACT ON CHILDREN

DEVELOPMENT

MIKE HUDSON ANAK SANGU

An Academic Writing Submitted In Partial Fulfillment of the Requirement

for Bachelor Degree of Social Sciences (Social Work Studies)

FACULTY OF SOCIAL SCIENCES

UNIVERSITI MALAYSIA SARAWAK

2008/2009


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ACKNOWLEDGEMENT

First and foremost, I would like to thank to Madam Gill Raja because has guide

me to finish this study. She also put so much effort in order to help me to do my writing

and she had empowered me until I can finish my Academic Writing. Beside that, I also

would like to thank to my all friends that always giving support and advices for the whole

semester. This is my first time to me to do this writing. Thus, I have a lot of difficulties

in finishing my research. However, these difficulties had helped me to learn a lot of thing

especially for the epilepsy especially on the children. I also to want dedicate my thanks to

both of my parent because always give support to me to finish this study. Finally, I want

to thank my friend who suffer from epilepsy since three years ago because gives me a lot

of information regarding this study.

Mike Hudson Sangu


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ABSTRACT

Epilepsy is one of the medical attentions which it is the condition that related to

the brain. It can be defined as repeated, unprovoked seizures. A seizure is caused by the

discharge of the collection of brain cells. Although epilepsy is the medical condition, it

has many non-medical effects on the people with epilepsy, family and community. The

purpose of this study is to explore the impact of epilepsy to the children development.

The impacts are can be seen in the social and psychological aspect. The study was done

based on the experience of the teenagers with epilepsy. From the interview that was done,

the epileptic person experience many effect from the epilepsy. The effect is on the

psychological which it causes the depression and tension. In social, epilepsy has limited

the social activity as well as it gives an impact to the relationship.


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LIST OF TABLE

Pages

Table 1 List of Drug for Each Types of Seizures 27

Table 2 Effect of Different Types of AED 28


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TABLE OF CONTENT

PagesACKNOWLEGDMENT i

ABSTRACT ii

LIST OF TABLE iii

INTRODUCTION

Epilepsy: A Call for help 1Objective 5

HISTORY OF EPILEPSY 6

MYTH AND FACT ABOUT EPILEPSY 8

WHAT IS EPILEPSY? 10

TYPES OF SEIZURES 13

CAUSES OF EPILEPSY 17

EFFECT OF EPILEPSY

a. Effect on Psychological 20b. Effect of Social Stigma On People with Epilepsy 21c. Effect on Education 23d. Effect on Employment 24e. Effect on Social Relationship 24f. Effect on Family 25

TREATMENT OF EPILEPSY: ANTIEPILECTIC DRUG (AED) 26

MANAGING EPILEPSY AS COPING MECHANISM AND

TREATMENT OF EPILEPSY 29

A STORY OF TEENAGER WITH EPILEPSYInterview 31

Background of the Respondent 31Epilepsy: A Sudden Condition 31

The Causes of Epilepsy 32The Change in Life 33

THEME AND ISSUE ARISINGa. Effect of Psychological 34b. Social Stigma 35c. Social Activity 36d. Effect of Medicine 37


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e. Relationship 38

CURRENT SITUATION 38

DISCUSSIONa. Future of Children with Epilepsy 40b. Implication on Social Work Practice 41

RECOMMENDATION 43

CONCLUSIONS 45

REFERENCES 47


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INTRODUCTION

Epilepsy: A Call for help

The phone rings, the time is 10.45 a.m. on 7th January 1985. The voice of thecaller is tense Your daughter had a fall and is unconscious. On getting this messagemy mind went blank. Just 3 hours ago I had given her breakfast and sent her to school,

hale and hearty as she always is. Immediately I drove from my office to her school in

Taman Sri Keramat. My daughter Safinaz was then 9 years old and in Standard 3. There

she lay unconscious on a wooden bench outside the Teachers room. Together with somehelp we got her into the car and drove her to Tawakal Hospital. She was immediately

seen by the Consultant Neuro Physician, who after examining her and some

investigations such as EEG and CT scan, put her on Tab XXX 0.25mg. We were shocked

to know that she had epilepsy, as she was such a healthy baby before. After 5 days in the

hospital, she was discharged. Her seizures were very unpredictable and frequent. She

could get as many as 10-12 seizure attacks a day and this will occur almost every week.Whenever the phone at home rings while Safinaz is away my heart misses a beat, for fear

it is about Safinaz having a seizure attack and injuring herself. This was the beginning of

our nightmare. We were very upset and unsure of how to manage her. This was affecting

my work in the office1

Syafinaz case in Malaysia is one of the examples of epilepsy case that have been

report every year. It can happened every where and can affect people of any age, sex,

race, social class or nationality.Epilepsy is a condition in which more than one non-

febrile seizure of any type has occurred at any time. (Hopkins, 1987a:3). In other

words, epilepsy are condition which one person experience repeat seizures that can last

from a few second to several minutes which it take on different form. Further to this,

different types of seizures come different area of the brain. There are two main groups of

seizures, generalised seizures and partial seizures and each of this group has several

1These stories are based on the personal account by a Malaysian mother of a child with epilepsy which taken from the

http://www.epilepsy.org.my/?cat=articles&mod=read&article=55.


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types. (Lowenstein, 2006). People with epilepsy tend to experience the same sort each

time.

Although there are many different types of epilepsy, people tend to make their

own assumption or perception about the epilepsy. Falling to the ground, the bubble at

the mouth and the flailing of the limbs are the thing that comes to most peoples minds

when the word epilepsy is mentioned. (Walker & Shorvon, 1999:7). In our society,

people tend to label people with epilepsy with the different term.

The term that people often label people with epilepsy is the term ofsawan babi

in Malay word which this means mad pig. Further to this, words like sawan babi or

sakit gila babi are carelessly bandied about, giving the disease negative connotations.

Yet, different cultures have their own names for epilepsy such as kaka elupa in Tamil

words which means pulling crow and ding-yang in Chinese culture which means

goat-insanityor mad goat. (www.epilepsy.org.my). On the other hand, some peoplemight think that people with epilepsy are mad or crazy because they believe that people

with epilepsy are being possessed by the demon.

Apart from that issue, there are many factors that can contribute to the epileptic

seizures. These factors are more not to be a main aspect in this writing but yet it is

important for people to know the factor that can contribute to the epilepsy. Further to this,

epilepsy can be caused by injury to the brain, due to trauma such as a car accident or a

head injury. In children, commonly epilepsy can be cause by high fever caused by an

infection, can be caused by inherited disorders or due to problems during birth.

(www.livebeyondepilpesy.com). However, in most cases, no cause is ever found.


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Yet, epilepsy is universal and the most common serious neurological disorder. At

least one to two and half million people will experience epilepsy at some time in their

lives. (Walker & Shorvon, 1999). The numbers of people who suffer from epilepsy are

not very accurate figure because some people with epilepsy might hide their epileptic

seizures. Further to this, most author and researcher want to determine the number of

epilepsy that occurs in the different age.

According to Lowenstein (2006) 5% to 10% of the world population will have at

least one epileptic seizure which the highest incidence occurring in early childhood and

late adulthood. Lennox (1960) has estimated that 75% of cases of epilepsy have their

onset before 20 years of age. In addition, Sunder (1997) stated that epilepsy affects 0.5%

to 1% of children up to age 16 years old whereas children with developmental

disabilities, the incidence of epilepsy increase by 30% to 50%. Hauser et al (1983) stated

the incidence of epilepsy is greatest in the first year of life and remain high up to 4 years

of age. Yet, the high incidence of seizures in early childhood means that most of those

developing epilepsy occur before the age of 20 years. (Hopkins, 1987a)

Based on the previous paragraph, it can be said that, epilepsy is mostly occurring

during the childhood and late adolescent. However, we need not to take too much time

trying to find out the different number and ages which epilepsy can occur but rather to

put more attention on the effects of epilepsy itself. This is the main aspect that needs to

be looked by the society. The effects of epilepsy on the development of the children are

more on the social aspect compare to the medical aspect.

In spite of the large numbers of people who have epilepsy, people with epilepsy

are faced medical effect as well as social effect. Effect from the medical model that can


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be seen is brain damage. Even though, epilepsy is more to the medical model, but the

social effect of epilepsy itself are also rampant. What is means is people with epilepsy

especially children have to cope with its psychological and social impact which is it can

be look more on the social model. Yet, the effects of epilepsy itself on the children as

well were rarely discussed.

Further to this, many people as well as children hiding their epilepsy from friend,

employers and sometimes even from members of their own family because their fear of

possible stigmatisation or prejudice from this people. People who suffer from epilepsy

especially children might be having a low self-esteem, low self-confidence and lack of

knowledge about epileptic seizures that they experience. Yet, it can be said that these

conditions indirectly affect the development of the children itself and it cause the

difficulty in their daily life.

Family also experience effect from the epilepsy as well. Epilepsy in childhood,

just as in adults, is a family problem which will have an impact on and modify the lives

of the entire family member. (Hoare, 1984). Family might be experience some aspect of

social as well as economic effect. When the children develops epileptic seizure, family

also need to give more attention on this, thus can increase worries and fears among them.

Family also still faces prejudice from others which is often through lack of knowledge

about what having epilepsy really means. Yet, epilepsy can affect the family dynamic as

well. The family is affected by childs condition and responds to the challenges.

(Weinstein, 2007)


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Objective

The main objective of this study is to explore the impact of the epilepsy on the

child development. Here, the focus of the impact on the children development is in the

psychological and the social aspect itself. There are many impact experiences by the

children with epilepsy. This will be discussing in the other part of this essay.

Beside that, the objectives of this study are to study the types of epilepsy and the

causes of epilepsy. Yet, the types and cause of epilepsy itself are more in the medical

model explanation. On the other hand, these studies also want to explore want to identify

the way to help children with the epilepsy.


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HISTORY OF EPILEPSY

Epilepsy itself has its own history. Yet, people have known about epilepsy for

thousands of years but have not understood it until recently. The ancient Babylonians

wrote about the symptoms and causes of epilepsy 3000 years ago. They thought that

seizures were caused by demons attacking the person. (Walker & Shorvon, 1999)

Different spirits were thought to cause the different kinds of seizure.

The Greeks believed that those with seizures must have offended the gods. In 400

B.C, the Greek physician Hippocrates was the first person to disprove the theory that

epilepsy, then called the 'sacred disease', was caused by demons or gods. (Chadwick &

Mann, 1950 in ODonohoe, 1994). He recommended physical treatments and stated that

if the disease became worse and cannot be cure, it can cause death.

(http://www.epilepsy.org.my/?cat=about&mod=read&article=4). Further to this,

Hippocrates has introduced his own cure on epilepsy. His cure for epilepsy was medicine

and diet based on his own unscientific theories of the balance between hot and cold.

(http://library.thinkquest.org/J001619/history.html). But, his recommendations are not

accepted by the people because in 1494 a wave of witch-hunting led to the death of more

than 200,000 women which during this time seizures were believed to be one of the

characteristics of a witch.

Yet, for the next 2,000 years, people with epilepsy were viewed with fear,

suspicion and misunderstanding and were facing social stigma from the society. People

with epilepsy were treated as outcasts and punished. To the ancient, the epileptic was an

object of horror and disgust and throughout almost all of history those afflicted have


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been viewed with anxiety and fear.(ODonohoe, 1994:2).Some, however, succeeded and

became famous the world over. Among these people were Socrates, Napoleon, Julius

Caesar, Czar Peter the Great of Russia, Pope Pius IX, the writer Fedor Dostoevski, the

poet Lord Byron and even several Olympic athletes. (ODonohoe, 1994)

The beginning to recognize epilepsy in the medical condition is started in the

earlier eighteenth century and in the nineteenth century. During this time, people have

improved knowledge and understanding about the epilepsy due to the advances

neurology and technology. In addition, as neurology emerged as a new discipline, the

concept of epilepsy as a brain disorder became more widely accepted especially in the

United Stated and Europe. Prior to this, the believed that epilepsy was cause by demon

also faded. People more look the epilepsy as a medical condition rather look that people

with epilepsy has been posses by the demon.

Further to this, the anti-epileptic drug also been introduced in 1857 and become

the first medication for people with epilepsy. It was not the until the end of the 19th

century that the first effective drug, potassium bromide was introduced and from that

time, drug treatment has allowed the majority of people with epilepsy to lead-normal and

seizures-free lives (Walker & Shorvon, 1999:8)

But, there are some people who still think that seizures are the result of a charm or

curse placed on them. However, most people who do not know about epilepsy tend to

equate it the mental health problem. But, nevertheless, this is not true, as many people

with epilepsy have normal life and can cope with their seizures. Epilepsy does not

discriminate. It affects both men and women, of all ages, races and socioeconomic levels.


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4. Myth : People with epilepsy are mentally ill or retardedFact : Although epilepsy is related to the brain, it does not always indicate that

a person is mentally ill or mentally retarded. However it can be

associated with learning problems.

5. Myth : People with epilepsy are violent or crazyFact : Many features of seizures and their immediate after effects can be easily

misunderstood as "crazy" or "violent" behavior. Depending on which

part of the brain is involved, there will be different physical symptoms.For example, a seizure victim may experience sudden and dramatic body

jerks, incomprehensible speech or become restless. These symptomsmay be misconstrued as being "crazy" by people.

6. Myth : People with epilepsy are disabled and cannot workFact : People with epilepsy are found in all walks of life and at all levels of

work. They have the same range of abilities as the rest of us. Some jobs

may not be suitable for people with uncontrolled epilepsy. However,many people with epilepsy are successful in challenging careers.

7. Myth : People with epilepsy are physically limited in what they can doFact : In most cases, epilepsy is not a barrier to physical achievement. Someindividuals who are more severely affected may be limited in what they

can do. People with epilepsy are advised not to participate in activities

such as swimming which may cause harm to themselves or other peoplewhich it is afraid that a seizure might occur while carrying out such

activity.

(Source: www.epilepsy.org.my)

Yet, the myth that discuss above can indirectly cause the negative impact to the

people with epilepsy. Stigmatisation on the people with epilepsy is the main impact that

can be seen because of the myth itself. Beside that it also can prevent people to help

people with epilepsy because they scared that they will be hurt by epileptic person.


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However, it is true that epilepsy change people life, but in most cases, it's a condition that

people can live with. The key to living with epilepsy is knowledge, about what to do and

what not to do.

WHAT IS EPILEPSY?

So in the earlier discussion, I have discussed about the history of epilepsy. I also

come out with the myth and fact about the epilepsy which can give indirectly impact to

the people with epilepsy. Yet, in this discussion I will focus on the epilepsy itself.

So, what is epilepsy? It is one of the chronic diseases? It is can be fatal? Even, I

also dont know what epilepsy standsfor when I first heard the word of epilepsy. When

I first heard about this word, I thought that it is a disease which occur when somebody

become like posses by the demon spirit. But, it is completely wrong.

Yet, epilepsy is one of the medical conditions. According to Walker & Shorvon,

(1999:18), epilepsy is defined as condition in which the person is prone to recurrent

epileptic seizures, so diagnosis is a measure of the probability of having epileptic

seizures. In other word, epilepsy is a tendency to have recurrent seizures that originate

in the brain. The brain is made up of billions of cells which process information from our

senses, thoughts, emotions, memories and actions. A seizure is the result of a temporary

disturbance of the brain's electrical activity. Epilepsy is characterized by recurrent

seizures which are sudden and brief, whose nature and intensity varies from person to

person. (www.pharmacy.gov.my/self_care_guide/Nerous%20System/Epilepsy.PDF).

Yet, according to Shinnar (2000), approximately one-third to one-half of the children and

adult with seizures will initially seek the medical attention following the single seizures.


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They might come to medical attention because they scared that they will have another

seizure.

In addition, epilepsy itself is more to the medical condition which involves the

problem with person brain. It is a fact that brain is one of the most important parts of the

human body because it guides us to function and to think. Yet, many author has define

epilepsy as a medical definition. Further to this, Browne & Feldman (1983) has defined

epilepsy as a common neurological disorder that consists of a wide variety of symptoms

arising from abnormal, excessive or synchronous neuronal activity in the brain. It is

include the activity of the brain which there is the disturbance of the electricity activity in

the brain.

Another author like Lowenstein (2006:187) has described epilepsy as a

condition in which a person has recurrent seizures due to the chronic, underlying

process. But, it is not necessarily diagnosed person have an epilepsy when he or she has

single seizures or recurrent seizures. This is argued by Walker & Shorvon (1999:18)

which they stated:

If you have one seizure brought on by excessive alcoholand then you become teetotal, the changes of having

another seizure are very small and you would not be

diagnosed as having epilepsy. If, on the other hand, you

had a number of seizures because damaged part of your

brain, the changes of having another seizures are very high

and you would be diagnosed as having epilepsy

Further to this, it is unclear for the doctor to diagnosed one person has epilepsy or

not. Diagnosis of epilepsy is usually made after two or more unprovoked seizures.

(Lofgren, 2007). Most of the doctor solely make a diagnose person as having an epilepsy

if they have two seizures within a year because the chances of having a third seizures are


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probably over 80%. (Walker & Shorvon, 1999). They added that doctor has difficulty to

diagnose a person have epilepsy when he or she only have one seizures.

In this sense, doctor usually assesses what chances of having another seizure are,

aided and abetted by various investigations and by knowledge of the type of seizures and

the probable cause. (Walker & Shorvon, 1999). Yet, according to Appleton et al

(1992:25), the diagnose of epilepsy is clinical and must be based on a detailed

description of events experienced by the patient before, during and after a seizures and

more importantly on an adequate eye-witness account

Taking into this account, the definition of epilepsy itself are more into the medical

model. The definition of epilepsy come out in different fact and it can be said that the

epilepsy itself are more depend on how many seizures that the person have within a year.

Yet, in short epilepsy is a condition which causes someone to have repeated spontaneous

epileptic fits or seizures. Seizures result from a distraction of brain function which may

alter behaviour, consciousness, movement, perception or sensation.

Based on the above discussion, there is no one single evidence that can recognize

the person has epilepsy or no. This is because most people with epilepsy eventually stop

having seizures and thus they cannot been recognizing as having epilepsy. Most

important here is epilepsy is a symptom and not a disease. It is more called as symptom

because it experienced by people.


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TYPES OF SEIZURES

In the earlier discussion, epilepsy is caused by the abnormal chemical activity in

the brain and it affecting how the brains work. The result of this abnormal activity in the

brain is seizures or fit. A seizures may last from a few second to several minutes and

takes different form. Yet, people with epilepsy tend to experiences different types of

seizures for each time. Almost all seizures are sudden, short-lived and self-limiting.

(Walker & Shorvon, 1999). The number of seizures can vary from less than one a year to

several per day. Seizures can happen at any time

Further to this, there are different types of seizures which commonly there are two

main groups which is generalised and partial or focal seizures. (Lowenstein, 2006). In

addition, these two types of seizures are depends on the part of brain involves. Our brains

are responsible for most of our bodily functions, so what someone experiences during a

seizure will depend on the part of the brain affected and how widely and rapidly it

spreads. In addition, these two types of seizures are can described the condition of the

person with epilepsy and it can be recognized by the fit or convulsion that experiences by

particular one person for each time.

According to the Lowenstein (2006), a generalised seizure involves diffuse

regions of the brain simultaneously. In other word, a generalised seizure involves the

both side of the brain at once. Person who are experience this will do not know when the

seizures will come. Yet, in short, it will come without warning and the consciousness is

lost immediately.

Further to this, generalised seizures can be divided into several groups which are

tonic-clonic seizures, tonic seizures, atonic seizures, myoclonic seizures and absence


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of the absence attack is a sudden onset, interruption of ongoing activities, a blank stare

and possibly a brief upward rotation of the eyes.

Yet, the above discussions are on the generalised seizures which it comes in

different situation when it attacks somebody. As I mentioned before, the other types of

seizures is partial or focal seizures. According to Lowenstein (2006), partial or focal

seizures occur within discrete regions of the brain. In other words, the partial seizures are

only affect one part or side of the brain and around 60% of all epileptics suffer from

them. (http://www.essortment.com/all/causesofepilep_rloq.htm). In partial seizures, it can

be divided into three groups which are simple partial seizures, complex partial seizures

and secondary generalised seizures. (Dreifuss, 1987)

A simple partial seizure is a condition which confined to one small part of the

brain, during which there is no loss of consciousness. These seizures may make person

feel frightened, odd, vivid memory flashbacks and feeling having an identical situation

before. (Walker & Shorvon, 1999). In addition, some person also feels some unpleasant

intense smell or tastes such as burning rubber or kerosene. They may also hear a sound

which includes crude or high complex sound. (Lowenstein, 2006). Yet, there may be

uncontrolled jerking of one arm or leg, unusual eye movement which it may turn to one

side. Some person may also experience flashing light in one half of the vision. Some

people may have a warning, called an aura(a simple partial seizure) just before losing

consciousness or becoming less aware of their surroundings (complex partial seizure). An

aura usually last just a few seconds but can be longer.

Meanwhile, the complex partial seizures is the next stage up from the simple

partial seizures because the word complex. In this, the seizures involve a larger part of


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CAUSES OF EPILEPSY

There are many causes of epilepsy. It can be said that the main causes of epilepsy

is because the abnormal activity in the brain which can cause the seizures. Yet, because

epilepsy has so many causes and can be linked to a number of other conditions, it is

sometimes very difficult to determine the cause of a particular case. In other word, in

most cases, no cause is ever found. For many suffers, (about 70%), no known cause is

ever found (Walker & Shorvon, 1999:30).

But, what are the factors that can contribute to the causes of the epilepsy itself?

These factors can be divided into several conditions which are including the brain

chemistry, hereditary causes, head injury, prenatal injury and environmental causes. All

this condition associated with epilepsy.

It can be said that the causes of epilepsy is because the brain chemistry itself. In

other word, epilepsy may develop because of an imbalance in those chemicals in the

brain that help the nerve cells in the brain transmit electrical impulses.

(http://www.ehealthmd.com/library/epilepsy/EPI_causes.html). According to Walker &

Shorvon (1999), this electrical impulses are like a telephone line which when the signal

reach the end of axon2. Then, it will cause the release of chemical and then these

chemicals communicate with the neuron3. This will cause an electrical storm as seen as

seizures.

2Axon is one of the part in the brain is like an arm and branches which function to carrier electrical signal in the brain.

(Walker & Shorvon, 1999)

3Neuron is the part of brain which consist of million of cells. (Walker & Shorvon, 1999)


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Hopkins (1987b) this condition will cause cerebral palsy which he stated that epilepsy in

association with birth injury may arise on a basis intra-cerebral or infraction. Kodrjavcev

et all (1985) has indicated that epilepsy was present in 52% of patient with severe or very

severe palsy but only 23% of those with mild or moderate palsy.

Another cause is by the environment itself. In this, the cause of epilepsy can be

associated with the use of alcohol and drug, lack of sleep, stress, or hormonal changes

and also withdrawal from certain antidepressant and anti-anxiety drugs. Seizures which

associated with alcohol may occur during the period of withdrawal of alcohol. (Hopkins,

1987b). Yet, over workload, a family row, divorce and other personal factor can increase

the emotional stress which this indirectly will cause epilepsy. The study about stress as a

risk factor for seizures has done by Temkin & Davis (1984) which they indicates that

high stress level and stressful event were associated with more frequent seizures.

EFFECT OF EPILEPSY

Even though, the epilepsy is the medical condition but the impact of epilepsy are

more to the social effect. In other words, epilepsy has many non-medical effects on the

people with epilepsy itself. The effect that always face by the people with epilepsy is on

the educational, employment, social relationship as well as the impact on the

psychosocial. In short, people with epilepsy need to cope with its social consequences

and psychological.

a. Effect on psychological


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Children with epilepsy often been associated with the seizures that attack them

which it can affect their development. This is because epilepsy is associated with the

brain function which it indirectly can give an impact to that person itself. In other word,

the epilepsy affects the mental development of that particular person. Further to this, the

they will question Who am I?, which this can be traumatic for them.

Yet, according to Mitchell & Flourie (1999), children and adolescent with

epilepsy may not function as well as their peer because of their condition that limited

their own behaviour. In addition, epilepsy may affect the self-image of the child or

adolescent which can result in anxiety, lack of confidence, low self-esteem, even grief

and depression. They also may withdraw from the social activity and situation. Kenner &

Shafer (2006) also added that people with seizures often have a cognitive problem such

as difficulty paying attention and slow thinking.

In addition, Hill (2007:10) has argue that grief at the realisation of being

disabled goes through stages of shock, anxiety, bargaining and denial, mourning and

depression, internalised anger, acknowledgement and finally acceptance and

adjustment. Beside that, epilepsy also can lead to anxiety behaviour because they

sometime does not no when the seizures come. This can lead them to feel lack of control

and helplessness. Yet, anxiety combined with guilt will become depression.

Children with epilepsy know that they are different from others. They will grow

many kind of feeling such as depression, tension, guilty and anxiety because of the

epilepsy. This may affect the performance of their study and also affect the social

situation.


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b. Effect of Social Stigma on People with EpilepsyPeople cannot run from facing stigma from society when there is something

negative happened. In addition, stigma carries all negative connotations about a person. It

is a way of how people treat an individual, groups, or community based on

discrimination, prejudice, and biased. According to the Mason, (2001: 18), stigma is not

isolated sociological concept but one that is more closely wrapped up with many other

aspect of the human condition, leading to prejudice and marginalization

Yet, the effect that most children with epilepsy face is on the social stigma. The

stigma that faced by the children with epilepsy can make them low self-esteem and self-

confidence. Regardless of whether or not a childs seizures are well controlled or

uncontrolled, or are accompanied by mental disabilities, the social stigmas, prejudice

and misconceptions which surround epilepsy may sidetrack him or her socially and

emotionally (Mitchell & Flourie, 1999:71). Further to this, children with epilepsy facing

social stigma because for certain people the seizures itself are frightening and often

misunderstood.

These social stigmas that face by children with epilepsy also can make them

become powerlessness and they also keep away or isolated themselves from the society.

In addition, children with epilepsy also experience discrimination because of the social

stigma. They might be discriminate from the educational and employment. There are

few occupation that are barred by statutory provision for people with epilepsyair craft

pilot, ambulance driver, taxi driver, train driver, merchant seaman and anyone working


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afterwards. These problems are causes by the epilepsy itself and antiepileptic drug which

can impair a childs ability to learn. (Walker & Shorvon, 1999)

In short, children with epilepsy may have difficulty with school work. They may

appear drowsy, lack application and concentration, or have memory problems. There may

be specific learning difficulties associated with reading or arithmetic in school work.

Thus, there is needs more attention from the teacher, school social work and parent to

address the problem that face by children with epilepsy in school. By working together,

they can help the child achieve success in school life. In addition, it can help to empower

people especially can perform well in their study and can increase their performance.

d. Effect on Employment

Epilepsy also can affect the employment. According to Hills (2007:10),

unemployment is higher among people with epilepsy, by up to 50% in developed

countries if seizures are not fully controlled and up to 100% in developing countries.

These also argue by Scambler (1987) which stated that unemployment rate for people

with epilepsy are higher in both Europe and United States.

This high unemployment rates might be result from the employer prejudice and

stigma. They also lack of information about the epilepsy itself which they might think

that people with epilepsy must be avoided to work with machinery or believed that

people with epilepsy cannot drive. Beside that, inadequate work training or work

experience among people with epilepsy might be the causes of high unemployment

because they might unable to perform well during job training. Co-workers can also be

part of the problem. They may not understand what epilepsy is and if they don't know


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what to do if they see someone having a seizure, they'll be uncomfortable when people

with epilepsy around.

e.

Effect on Social Relationship

Yet, even though the effects on social relationship are not the focus of this study,

but there are effect that experience by the children with epilepsy regarding their

relationship with others. Children with epilepsy may isolate themselves from others due

to their condition. They isolated themselves because they fear of embarrassment by their

seizure which causing reluctant to engage in social interaction with others. (Hills, 2007)

Over-protection by parent also can cause the social isolation among the children

with epilepsy. These is because children with epilepsy are restricted to do some activity

such as swimming where as it need to supervision from other when to do such activities.

This indirectly can result the poor social relationship between the people with epilepsy

and society.

f. Effect on Family

Despite the epilepsy affect the people with epilepsy itself, the epilepsy also can

give an impact to the family. This is because epilepsy itself enters the family system. The

family indirectly affected by the childs condition and respond to the challenges. These

challenges tend to stress family. (Weinstein, 2007)

When child diagnose has epilepsy, parents need to put more attention to their

child by providing more need to the children. Parent also worried about how seizures

would affect their children ability to learn and how family members can adjust to their


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children condition. These worried increase the tension among the parent as their need to

dealing with their other roles such as a mother, wife or husband. In addition, it also can

cause the poor relationship between the child with epilepsy and siblings because parents

have to put much time to the children with epilepsy. (Hills, 2007)

TREATMENT OF EPILEPSY: ANTIEPILEPSTIC DRUG (AED)

In the earlier discussion, it is argue that epilepsy is a medical condition which

needs more attention from the medical treatment. Yet, medical treatment means that

people with epilepsy need to take some drug therapy which Antiepileptic drug (AED) in

order to control their seizures. Yet, taking AED is the main important treatment for

people with epilepsy because by taking AED it can control their seizures. In addition,

most of the people with epilepsy have a problem to control their seizures. (ODonohoe,

1994)

The uses of AED are beginning with the discovery of the effectiveness of

potassium bromide in 1857. (ODonohoe, 1994). This uses of potassium bromide was

founded by Sir Charles Locock, an obstetrician, who are interest in epilepsy because of

mistaken idea that some women with epilepsy came from their wombs. (Walker &

Shorvon, 1999). Then, in 1912, the phenobarbitone was introduced as an AED followed

by phenytoin in 1938.

Yet, there are many types of AED which have different function on the different

types of seizures. The choice of antiepileptic drug (AED) is based on the seizure type,

the epilepsy syndrome and individual factor such as age, gender, other medical

conditions and which potential side effects are more acceptable by family (Shinnar,


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1999:64). Here, it is important to take account of this matter because AED have it own

dosage for every type of seizures.

Further to this, most AED work in different types of epilepsy. In other word, what

may be effective drug in one person may not effective in another. This is because some

epileptic drug only works in particular forms of epilepsy such as ethosuximide for

absence epilepsy and in contrast some AED may make some epilepsy worse such as

carbamazepine for myoclonic seizures. (Walker & Shorvon, 1999).

Table 1: List of Drug for Each Type of Seizures

Seizures Type First Drug Second Drug

Partial Seizures

1. Simple PartialCarbamazephinePhenytoin

Valproate

Acetazolamide

ClobazamGabapentin

LamotriginePhenobarbitone

2. Complex Partial3. Secondary

Generalised

Generalised Seizures

1. Absences EthosuximideValproate

Acetazolamide

ClonazepamLamotrigine

2. Atonic / TonicValproate

Acetazolamide

LamotrigineClonazepam

ClobazamGabapentin

3. Tonic-clonic /Clonic

Carbamazepine

PhenytoinValproate

Acetazolamide

LamotrigineTopiramate


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MANAGING EPILEPSY AS COPING MECHANISM AND TREATMENT OF

EPILEPSY

Apart from taking antiepileptic-drug for control the seizures itself, it is also

important for children with epilepsy have a knowledge on how to managing their

seizures. Yet, in fact, AED is the main treatment for epileptic children but the way to

managing the seizures is one the crucial aspect in order to control the seizures. Managing

the epilepsy is not solely in how to control the seizures itself but it is also essential to

children with epilepsy to live normal like others. Here, managing is including on how

children with epilepsy prevent the seizures and the most important is what people should

do when there is a seizures.

Children with epilepsy itself are important people in managing their epilepsy

because they know well about their own condition. Epilepsy does not mean that life has

to drastically change. Maintaining a healthy and well-balanced lifestyle is important for

people with epilepsy. Here, self-management are important are important to people with

epilepsy to know their own situation. Self-management here means that people with

epilepsy need know about their own epilepsy and how to prevent it.

The main aspect of self-management here is remembered to take epileptic

medication at the right time. It is important to take the medication in the proper time

because it is one of the ways to reduce the occurrences of seizures. According to Walker

& Shorvon (1999), one of most common cause of uncontrolled seizures is peoples

failing to take their medication correctly. Apart from that, they also need to get enough

sleep and try to limit the workload and stress. A regular sleep pattern ensuring enough

rest and by doing outside activity can reduce stress which indirectly can reduce the


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A STORY OF TEENAGER WITH EPILEPSY

Interview

On 28 September 2008, I did my interview with Ahmad (not real name) who has

suffered from epilepsy since three years ago. During my interview, Ahmad also bring

along with his friend, Adam (not real name) who are closely with him and his roommate

at the Polytechnic. Adam also his only friend who are witness how epilepsy attacks

Ahmad. Thus, my interviews become easier because I can obtain more information from

both of them. I also dont face any problem when doing my interview because Ahmad

and I are well-known.

Background of respondent

Ahmad (not real name) is a Malay man. He is 19 years old and currently study at

one of Polytechnic in Sarawak, taking certificate of mechanical engineering. He is the

eldest son from the five siblings. His father is a police officer and his mother work as

school secretary.

Epilepsy: A Sudden Condition

According to Ahmad, he suffers from epilepsy since he was 16 years old which is

in December 2005. The story was beginning in his house at when he answers a phone call

from his friend. While he answers the phone call, he suddenly collapsed and his body was

cramped about 5 minutes. According to him, he was feeling unconscious during that time

and he told me that he remembers that he yelling his mother, mak before he was

collapsed and unconscious.


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Then, his mother quickly brought him to the hospital. At hospital, doctors do

some investigation by doing EEG (electroencephalography)5

scan to him. The scan is

done but the result stated that there are not evidence to diagnose him have an epilepsy.

But, doctor suspected him have an epilepsy and during at hospital, nurses and doctor treat

him like him have an epilepsy. He stayed for a week at hospital for further investigation

and treatment.

Yet, till this interview was done, Ahmad only has seven seizures since three years

ago. Ahmad also still on treatment which he taking AED which is Carbamazepine

regularly.

The Causes of Epilepsy

Yet, when talking about the causes of epilepsy, there are several causes that can

cause the epilepsy. There are many possible causes of epilepsy such as brain injury due to

an accident, an infection, or a stroke which causes brain damage.

But, all the causes that I mentioned above are cannot explain the causes of

Ahmads epilepsy. When I ask him about the cause of his epilepsy, he dont know the

main causes of his epilepsy yet the result of EEG scan stated t hat his brain doesnt have

any problem. I also ask him is that whether any of his family members has epilepsy and

he also told me that his family doesnt have a history of epilepsy. Yet, in the earlier

discussion, it is a small percentage that the epilepsy is cause by the hereditary from the

family.

5Electroencephalographyis a tool with wired attached to different parts of head which connected to the

amplifier and magnifies the small electrical signal from the brain. (Walker & Shorvon, 1999)


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Because of his situation, Ahmad needs to change his life which it directly related

to the epilepsy. Ahmad feels that he is different before and after he has epilepsy.

Theme and Issue Arising

Generally, people who suffer from epilepsy will feel that they are change. Yet,

this here change means the impact of epilepsy. In Ahmad case, there are many possible

impacts that faced by him such as impact on social, emotional, physical as well as

economic.

a.

Effect on psychological

Ahmad mentions that after he has epilepsy since three years ago, he often feels

tired and restless. This condition was result from the effect of the medication that he

takes. Yet, he also has a memory problem which he sometime forgot to take medicine.

This indirectly will affect his study.

Beside that, he also feel depress. He not feel depress about the epilepsy itself but

he feel depress because he need to follow the schedule to take an AED in the right time.

He needs to take one tablet per day and if he forgot to take the medicine, his body will

become tired and he will know that seizures will come. He also experience anxiety and

sometime headaches because of his health condition.

b. Social StigmaAhmad also feels his life change after he have epilepsy. There are many impacts

that Ahmad faced yet in term of his social life. First, when he knows that he has an

epileptic seizure, he shy to share with others especially with his friends and classmate


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that he has epilepsy. He shies to share with others about his condition because he scared

that his friend will keep away from him.

He also scared that he will be lonely without any friends that can accompany him.

In addition, he also try to keep it secret from other because he feel that if he told others

about his condition, they will said that he is crazy people. Yet, some people don't

understand epilepsy and think it's a mental illness or a kind of retardation.

I feel that people will look at me as a gila (mad person)

because of my situation and because of this I dont want to share

with my classmate during the school time (Ahmad)

Sometime when his neighbourhoods saw he has seizures, they will come over to

see him have a seizure. He feels that people like to see him when he has seizures rather to

help him.

I feel very weird that people always come to me when I have

seizures but I dont know what the purpose that they see me

because during the seizures Im in unconscioushere I feel that

they only want to see me rather to help me (Ahmad)

These stigmas indirectly make Ahmad low self esteem and self-confidence.

Stigma that face by Ahmad also face by other people who have epilepsy.

c. Social ActivityBeside that, Ahmad also needs to change his social life. In other word, he needs to

reduce the activity that he often did before he have epilepsy. For example, when his

friend goes for swimming, he cannot go because doctor asks him not to go swimming yet

it is dangerous for him. This make Ahmad feel jealous because many things that his


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friend can do but he cannot do. He just can saw his friend swimming and enjoy between

them. He mentioned that his feel very lonely and useless because of his condition, he

need to stay away from the thing that he like to do such as swimming.

Im jealous that my friend can do many things like swimming,

because I like swimming, and saw my friend sleep late at night,

but I only can saw what they do because I know what limit I

have (Ahmad)

In addition, Ahmad also been selected for National Service (NS) training, but yet

because of his condition he cannot go for that training.

After I finish my SPM (Sijil Pelajaran Malaysia), I was selected

to go for National Service training. I was happy that time even

my friend said the training itself give many benefit.but I so sad

during that time because doctor ask me not to go(Ahmad)

All above discussion on social activity show that Ahmad need to reduce the social

activity.

d. Effect of medicineThere is a fact that people with epilepsy will experience the effect of medicine

that they take to control their seizures. There are several possible effects that Ahmad

faces because of the AED that he takes. He cannot pay more attention to his teacher when

in school. This is not because of his epilepsy but this is because of the effect from the

medicine that he takes. The AED that he takes make him feel restless and often feel

drowsiness.


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Now I feel so sleepier even though I get enough sleep last night.

This is the side-effect from the medicine that I take (Ahmad)

Ahmad also experience short term memory loss because of the AED that he takes.

In addition, he sometime forgot to take the medicine and this make him feel like seizures

will come. Yet, this condition has reflected my earlier discussion on the side-effect of

AED which one of the side-effect is connected to the memory problem.

e. RelationshipBased on Ahmad story, relationship with his father are not good. He not was

feeling very happy with his father which not concern with his condition. He also feels

that his fathers are not concern with his need as teenager with epilepsy. He also

mentioned that he always in fighting with his father because his fathers are not happy

with what he does.

But, in contrast, he feels that his mothers are more concern with him. In other

words, he are more attach to his mother. Here, the roles of attachment are important as

Ahmad need to cope with his condition. He always refers to his mother when he has a

problem or conflict. In addition, he feels that his mother concern with his need and

condition as an epileptic person.

My mum is very concern to me. Yet, when I have problem, I will

discuss with her and when I need to go for medical treatment, my

mum will send me to hospitalmy mum also worry when I need

to go far away from her (Ahmad)


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Current Situation

In the interview, I also ask about the current situation of Ahmad. During the

interview, he feels very sleepier. But, regarding his condition as epileptic person, he feels

happy and accepts for what he is. He thinks positive about his condition and believes that

what has happen to him as a gift from the god. Yet, in his first year after the incidence of

seizures, he cannot manage his seizures and but after a year, he could know when the

seizures will come. This means that he learn from the past experience and this past

experience has guided him on how to manage his epilepsy. The transitions from the first

year of having epilepsy to the next year have given him knowledge to manage his

epilepsy.

I know when the seizures will come...when my small eye goes

to the right side and my body feel different. I quickly fight this

situation by prevent my small eyes goes to the right side and

make my body sweating (Ahmad)

He also not feels embarrassed to share about his condition despite he know that

some people do not understand the condition that he face. He feels that it is good for him

to share about his condition to others because he knows that if the seizures attack him, his

friend will help him.

When first Ahmad told me that he has epilepsy, I do not know

what epilepsy is even I dont care about it but until one day

seizures attack Ahmad, I cannot do anything. Thus, start from

that day I know what is epilepsy and I try to help Ahmad with his

situation (Adam)


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Now, Ahmad feels that his life is better than the first year he has epilepsy. Even

though epilepsy have change his social life and also give an impact to his psychological,

he was happy because he believed that there are some people outside there have worse

condition than him. Ahmad also feels very happy and surprise because there are some

people concern about his condition and situation. Thus, these help him to increase the

self-esteem and self-confidence.

DISCUSSIONS

a.

Future of children with Epilepsy

In this discussion, I try to emphasis the future of children with epilepsy. Based on

the experience that Ahmad faces with his epilepsy, the issue of the future children with

epilepsy are rarely discussed. Yet, children with epilepsy often face stigma from the

society and experience the effect of the epilepsy itself. These are the current situation that

children with epilepsy face in their life. But, how about their future? Is there any one can

accept he or she as a life partner or

In fact, children with epilepsy are not solely concern with the current situation but

yet they also concern about their future life. Taking into consideration with Ahmad case,

he also expresses his concern about his future life. What concern him about his future is

about his future children. He afraid that his futures children will be like him despite he

dont want his future children has epilepsy because he knows about the effect of it. The

concern of the family life also can be the issue of the future life of children with epilepsy.

This is because children with epilepsy does not know when their will free from the

seizures. Yet, their might be live with epilepsy for entire of their life.


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Another issue that become concern of people especially children with the epilepsy

is the issue of employment. Yet, during the childhood time, they might be concern about

on how to manage their seizures in school. But, after their come into adolescent phase,

they might be thinking about the future employment that suitable for them. They also

question that is there any employee can accept their as a worker and if their accepted, can

the environment of the workplace provide them a free environment from stigmatisation

and discrimination.

Thus far, all the above discussions are related each other. The future of people

with epilepsy are not only on the people with epilepsy itself, but all society need to be

more concern the situation of children with epilepsy by giving them a space to show their

own potential.

b. Implication on Social Work PracticeUntil now, it is rarely discussion about the implication of social work practice

with the children with epilepsy itself. In fact, the roles of social worker in order to help

children with epilepsy are important aspect in the social work practice. Yet, as a

background of social work student, I think that social worker can contribute to help

children with epilepsybecause it is a role of social worker as change agent. In addition,

the social work goal when dealing with different kind of people such as children with

epilepsy is to enhance problem-solving, coping and development capacities of people.

(Gibleman, 1995)

Further to this, there are many role that social worker can do. Blake (1979 in

Kistner & DeWeaver, 1997) has identified four roles of school social work in order to

help children with epilepsy which is (1) casework, (2) education, (3) coordination and


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liaison services with medical institution and (4) advocacy. Yet, all these roles are related

to the social work practice in every day life.

In dealing with children with epilepsy, social worker can provide a counselling to

the children with epilepsy itself and to the family. This can help the children with

epilepsy to adjust with his or her condition and help the family to improve on how to deal

with seizures. Consultations with social worker can help, especially with how the teen

has adjusted to living with epilepsy, social problem, family issues or other factor that

may contribute to mood or behaviour problem (Kistner & DeWeaver, 1997:54)

Yet, as a social worker, we need to ensure the value and principle in social work

practice are been practice when dealing with people with epilepsy. Value and principle

such as acceptance, empowerment and self-determination are the principle that can be

practice. Yet, this value and principle are interrelated each other. As a social worker, we

need to accept the children with epilepsy for what they are which it can help us to

empower the children with epilepsy to cope with his condition. This indirectly can

enhance the self-determination among the children with epilepsy in making the decision.

Thus, it is not solely the task of doctor to help children with epilepsy but the role

of social worker are essential to help children with epilepsy to cope with his or her

condition. Social worker can empower children with epilepsy by giving them an

education about the epilepsy itself beside create the awareness to the society about the

important to help children with epilepsy.


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RECOMMENDATIONS

Recommendation can be taken up based on the Ahmad experience. The

recommendation itself are based on the personal experience and the information that I

have read and collected through the book, journal and internet which it can help people

like Ahmad to cope with their condition.

Yet, children with epilepsy have a problem with their memory. Ahmad also

experiences this problem which cause him forgot to take medicine regularly. It can affect

their epilepsy condition. This is because children with epilepsy like Ahmad need to take

AED regularly and take it at the right time. So, because of this problem, the purpose of

the antiepileptic drug to control the seizures cannot be achieved. Thus, it is important for

people like Ahmad to take a note on the medicine that they take. In other words, they can

make a diary about their epilepsy. They can make a note about the appointment with the

doctor and they also can take a note after they take medicine in a day inside the diary.

This indirectly can help them to remember that whether they already take the medicine or

not.

Apart from that, giving a proper knowledge to the children with epilepsy is

important. This is because by giving the knowledge to them, it can help them to

understand more about the condition of epilepsy. It also helps them to manage their

epilepsy and can reduce the seizures. Apart from giving education to the person with

epilepsy itself, society also can be including in this. By giving knowledge to the society,

it can increase the understanding of society about epilepsy. Societies need to know and

understand the condition of epilepsy and this will help them to know what to do in the


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event of seizures. Yet, this also can reduce the stigma of the society towards the people

with epilepsy.

Beside that, in education system, epilepsy education and awareness should be part

of the school curriculum whenever one or more students at school have epilepsy. Because

seizures are unpredictable, anyone at school may need to respond to a seizure. If first

student are not well prepared, the result may not only be medical complications, but also

greater embarrassment or fear for the student with epilepsy. Yet, by doing these, it also

will free the school environment from the stigmatisation and discrimination toward

student with epilepsy because these could increase stress, which may affect school

performance or even make seizures more frequent. Thus, the education system needs to

be aware of this situation on order to help children with epilepsy.

Role of the government need to be consider. In this sense, Malaysia government

should support funding for epilepsy research in psychosocial, behavioural, cost of care,

children health and educational health. They also need to promote the effective

implementation and enforcement in the area of epilepsy itself to reduce the stigma and

discrimination on the epileptic person.


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CONCLUSIONS

Epilepsy is one of the medical conditions but the effects of epilepsy are more on

the social aspect rather than medical aspect. Children with epilepsy experience different

types of epilepsy which it comes into the two major types of seizures, partial and

generalised seizures. Yet, brain injury, hereditary causes and environmental itself can

contribute to the causes of epilepsy. But, most of the causes of epilepsy itself are

unknown and sometime cannot be unidentified by the medical technologies.

The effects of the epilepsy itself in the social aspect are really seen in the people

with epilepsy especially to the children. The effect that they may face is come into

different aspects which have affected them especially in their development as a child.

Even though the epilepsy is more to the medical condition which involve the neurological

aspect, but the children with epilepsy need to cope with its social and psychological

consequences. Further to this, psychological which associated with the emotional and

mental are more seen on the children. As children, they need more psychological need

and esteem need in order to help them to develop. Yet, as they develop, they need to cope

with all the effect of epilepsy as well the side effect of medicine.

By looking into the Ahmad case and my background as a social work student, it is

important for the children with epilepsy to know about the epilepsy yet in term of how to

manage the seizure. Im agree that the main treatment of epilepsy is by taking a medicine

but without the self-management from the children itself, the seizures cannot be control

and it can worse the condition of the children.


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The children need to know better about their own health condition which they can

prevent and control their seizures. But, it is not only the children responsible to this, yet

the role of the family especially parent are important to help the children to cope with the

epilepsy. The role of school and teacher also can be essential as they also have a direct

contact with the children in the school. At a macro level, the societies itself have to aware

that the children who have an epilepsy is not a mad person or been possesses by the

demon spirit, but it is the medical condition which it related to the function of the brain.

Society need to ensure that the environments of children with epilepsy are free from the

stigmatisation and discrimination whereas this can help the children to go through with

their condition and situation.

To conclude this, I believed that children with epilepsy are not born to be like

such condition. Children with epilepsy also a human which they also need a space to

develop as children and to cope with their own condition. As a social work student which

holds the value and principle of social work, it is important for me to help children with

epilepsy to go through with the impact of epilepsy and the most essential is empower the

children to increase the self-determination among the children.


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