DEVELOPMENT
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
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
Pages
ACKNOWLEGDMENT i
ABSTRACT ii
LIST OF TABLE iii
INTRODUCTION
Epilepsy: A Call for help 1
Objective 5
HISTORY OF EPILEPSY 6
WHAT IS EPILEPSY? 10
TYPES OF SEIZURES 13
CAUSES OF EPILEPSY 17
EFFECT OF EPILEPSY
a. Effect on Psychological 20
b. Effect of Social Stigma On People with Epilepsy 21
c. Effect on Education 23
d. Effect on Employment 24
e. Effect on Social Relationship 24
f. Effect on Family 25
CURRENT SITUATION 38
DISCUSSION
a. Future of Children with Epilepsy 40
b. Implication on Social Work Practice 41
RECOMMENDATION 43
CONCLUSIONS 45
REFERENCES 47
INTRODUCTION
“The phone rings, the time is 10.45 a.m. on 7th January 1985. The voice of the
caller is tense “Your daughter had a fall and is unconscious”. On getting this message
my 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 Teacher’s room. Together with some
help 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 office”1
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
1
These 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.
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 people’s 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 of “sawan 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
might think that people with epilepsy are mad or crazy because they believe that people
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
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
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%
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
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
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
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
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
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 child‟s condition and responds to the challenges.
(Weinstein, 2007)
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
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)
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 O‟Donohoe, 1994). He recommended physical treatments and stated that
if the disease became worse and cannot be cure, it can cause death.
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.
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
been viewed with anxiety and fear. (O‟Donohoe, 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. (O‟Donohoe, 1994)
earlier eighteenth century and in the nineteenth century. During this time, people have
improved knowledge and understanding about the epilepsy due to the advances
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
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
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.
MYTH AND FACT ABOUT EPILEPSY
When talking about epilepsy, there are many perceptions about the epilepsy itself.
In addition, these perceptions come out whether in positive or negative thought. Yet, this
might be influence by the history of epilepsy itself or by people who are experience the
epilepsy.
Thus far, in the modern society, there are some people might have a negative
perception about the people with epilepsy. Even though, we are now going through into
the globalization world which involves the new advances technology, people tend to
make a wrong or negative perception about the epilepsy itself. Yet, in this discussion, I
try to come out some of the myth and fact about the epilepsy. Below are the myth and
Fact : Most cases of epilepsy are not inherited, although some types are
genetically transmitted (passed on through the family).
4. Myth : People with epilepsy are mentally ill or retarded
Fact : 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.
Fact : 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 symptoms
may be misconstrued as being "crazy" by people.
Fact : 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 do
(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.
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 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 don‟t know what epilepsy stands for 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
Yet, epilepsy is one of the medical conditions. According to Walker & Shorvon,
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
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.
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
include the activity of the brain which there is the disturbance of the electricity activity in
the brain.
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)
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
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
description of events experienced by the patient before, during and after a seizures and
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
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
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
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
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
seizures. (Appleton et al, 1992). These types of generalised seizures have it own
explanation which can be described by the condition or situation during the seizures.
A tonic-clonic seizure also been known as grand mal seizures which is the
seizures make body stiffen and the person will fall down. “Tonic-clonic seizures are the
main seizures types in 10% of all people with epilepsy” (Lowenstein, 2006:190). In
addition, during this seizures, the person may bite his or her tongue or with himself.
These seizures usually last for few minutes and after that the person is often confused and
may not know where he or she is. They will also often sleep. (Walker & Shorvon, 1999).
Meanwhile, the tonic seizures are the condition which the muscles stiffen and cause a
sudden fall without jerking. It is usually sudden loss of consciousness and contraction of
addition to this, the people are not shaking at all and he or she just falls like a board.
The atonic seizures cause a sudden loss of muscle strength and consciousness
resulting in the person falling to the floor. They recover immediately, however the
seriousness comes from the risk of injury from hitting their head or falling to the floor.
“This can be extremely dangerous since there is substantial risk of direct head injury with
the fall”. (Lowenstein, 2006:190). Another seizures which is a myoclonic seizures which
cause a sudden jerk of the body or limbs (arms or legs), which may cause the person to
drop the things they have in the hands. People with these seizures may occur mainly
around the time of going to sleep or awakening from sleep. (Dreifuss, 1987). The last one
of generalised seizures is absence seizures. These type of seizures also known as petit
mal attack. (Walker & Shorvon, 1999). According to Dreifuss (1987:94), “the hallmark
of the absence attack is a sudden onset, interruption of ongoing activities, a blank stare
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 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
be divided into three groups which are simple partial seizures, complex partial seizures
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
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
the brain. “Complex partial seizures are characterized by focal seizures activity
contact with the environment” (Lowenstein, 2006:188). In other words, person who
experienced this type of seizures becomes unconscious about the surrounding or action.
They might fumble with their own hand, chew, swallow, run, talk rapidly, even dance or
go through a range of action. In addition, they might be confused due to the seizures and
the transaction to full recovery of consciousness may range from second up to an hour.
After the occasion, he or she is completely do not know what he or she has done. (Walker
The third type of partial seizure is secondary generalized seizures. These seizures
are result from the spread of the seizures throughout both of the brain. According to
Walker & Shorvon (1999), the spread can be slow as the person will have a warning that
they will have seizures but the spread itself also can become faster and the person will
loses his or her consciousness. Dreifuss (1987) added that this spread are depend on the
factor such as age, previous seizures and the area of brain originating the seizures. Yet,
the symptom of these secondary generalised seizures are quiet similar with the tonic-
clonic seizures which the person might bite his or her tongue, suddenly fall and his or her
Thus far, it is important for people with epilepsy as well society to know the type
of the epilepsy. There are several types of epilepsy which it consist two main groups that
is generalised seizures and partial seizures. It is important for them to know the types of
epilepsy because it can be a guideline for them on how to handle and manage the
seizures.
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
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
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.
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.
2
Axon 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)
3
Neuron is the part of brain which consist of million of cells. (Walker & Shorvon, 1999)
Another condition that can cause the epilepsy is the hereditary causes. But, it is a
small number of cases that causes of epilepsy are from the hereditary causes. “Except in a
few genetically inherited conditions that can cause epilepsy, the risk of passing the
epilepsy on to your offspring are very small” (Walker & Shorvon, 1999:30).Yet, Bundey
(1987) in her study has make a conclusion that a patient who convulse after stroke are
more likely to have a family history of seizures than those who do not. In addition, many
types of epilepsy tend to run in families, and some have been traced to an abnormality in
a specific gene.
Beside that, the head injury also can cause the epilepsy. Head injury that cause by
an accident can cause the seizures. If the head injury is severe, the seizures may not begin
until years later. If the injury is mild, the risk is slight. Yet, Schachter (2006) has stated
that severe head injury is the most common known cause in young adults and in middle
age, strokes, tumors, and injuries are more frequent. Walker & Shorvon (1999) added that
the epilepsy can present many years after the damaged has occurred. For example, it is
uncommon for people who have sustained head injury in childhood to present with
epilepsy in their adulthood. In addition, the study that done by Skandsen et all (2008) on
135 patient who are have head injury in Norway has conclude that first episode of
seizures was eight months and 83% of the individuals with posttraumatic epilepsy
In the prenatal injuries, it more common happens during the birth of the infancy.
In a fetus, the developing brain is susceptible to prenatal injuries that may occur if the
pregnant mother has an infection, doesn't eat properly, smokes or abuses drugs or
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
psychosocial. In short, people with epilepsy need to cope with its social consequences
and psychological.
a. Effect on psychological
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
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
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.
b. Effect of Social Stigma on People with Epilepsy
People cannot run from facing stigma from society when there is something
negative happened. In addition, stigma carries all negative connotations about a person. It
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
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-
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 epilepsy…air craft
pilot, ambulance driver, taxi driver, train driver, merchant seaman and anyone working
in the armed services, fired brigade or police” (Walker & Shorvon, 1999:68). This form
Yet, in Malaysia the discrimination also face by the people with epilepsy. This
can be based on the story of a mother with a two children who are with epilepsy since she
stills a baby. Because of her epilepsy, Azlina Zainal Abidin, 30, been isolated by society
and even worse she also face pressure from her neighbourhood. 4
c. Effect on Education
one of the important aspects in people life. Educations itself are important for children
with epilepsy because everybody has a right to have a better education. But, children with
According to Fastenau et al (2008), in their study has conclude that children with
epilepsy are at the greater risk for academic difficulties compared to healthy children and
those are with chronic illness. They also added that children with epilepsy are less
successful than their peers thus this indirectly can cause the poor achievement among
them.
Yet, Hills (2007) has stated that a high prevalence is found in children with
epilepsy in learning disabilities and memory problem. Further to this, after a seizure,
some children are unable to remember anything that happened in previous day or
4
These stories are taken from the Berita Harian news with the heading “Anggapan gila punca pesakit sawan
disishkan”. This story also can be access at the
http://www.bharian.com.my/Current_News/BH/Sunday/Dimensi/20080316124059/Article/
afterwards. These problems are causes by the epilepsy itself and antiepileptic drug which
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
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
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
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
what to do if they see someone having a seizure, they'll be uncomfortable when people
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 child‟s condition and respond to the challenges. These
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
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)
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. (O‟Donohoe,
1994)
The uses of AED are beginning with the discovery of the effectiveness of
potassium bromide in 1857. (O‟Donohoe, 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,
1999:64). Here, it is important to take account of this matter because AED have it own
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
Partial Seizures
1. Simple Partial
Acetazolamide
2. Complex Partial Carbamazephine Clobazam
Phenytoin Gabapentin
3. Secondary Valproate Lamotrigine
Generalised
Phenobarbitone
Generalised Seizures
Any type of medication, not just antiepileptic drugs (AED), can have side effects.
These side effects can range from mild to severe. Yet, side effect of AED can be a short
term effect and long term effect. In short time effect, people may experience some effect
such as sleepiness and fatigue, dizzy, irritability and allergic reaction or skin rash. In long
term effect, they may have poor memory and concentration, slow speech, weight gain or
Source: (www.mpaeds.org.my/PaediatricProtocols/35.%20Epilepsy.pdf)
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
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
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.
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 people‟s
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
seizures itself. Beside that, people with epilepsy also need to avoid the stimulant that can
cause seizures to them such as alcohol or drug. Children with epilepsy also need to
arrange a regular review with the doctor which this can help them to notices about the
Apart from the children with epilepsy itself, the family and other close contact
also need to know about the epilepsy. In addition, they need to know about what to do in
the event of seizures. This aspect is important for them because the unpredictability of the
seizures. “The family that is well informed about epilepsy is better able to deal with the
daily task of raising a child who has seizures” (Hickey, 1999:71). In school, the roles of
teacher also important to help the student with epilepsy. Teacher need to know and
understand about the seizures and the proper first-aid in the school setting.
Yet, the most important here is the knowledge about the epilepsy itself. Children
with epilepsy itself or people who are close contact with them need to know the epilepsy.
They need to get as much as information about the epilepsy so it can help them to
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 don‟t face any problem when doing my interview because Ahmad
Background of respondent
Ahmad (not real name) is a Malay man. He is 19 years old and currently study at
eldest son from the five siblings. His father is a police officer and his mother work as
school secretary.
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
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.
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
But, all the causes that I mentioned above are cannot explain the causes of
Ahmad‟s epilepsy. When I ask him about the cause of his epilepsy, he don‟t know the
main causes of his epilepsy yet the result of EEG scan stated that his brain doesn‟t 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 doesn‟t 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.
5
Electroencephalography is 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)
But, Ahmad told me that he suffer a head injury when he 3 years old. During that
time, his head is bleeding and need a medical treatment for that injury. Yet, one of the
causes of epilepsy is because of the head injury. This is might be the causes of epilepsy
After the incidence, he need to more attention to take care of his health despite he
want to do the activity that he like. He also mention that his life his change because of the
follow a proper schedule. Yet, Ahmad also told that doctor ask him to stop taking AED
for two weeks to look whether he can cope without it. But, the result is not as an expected
because within two weeks without taking any AED, he can feel that seizures will attack
Apart from that, he also cannot be direct expose to the direct flash such as camera
flash because if his eye expose to such light, the seizures will come. Yet, he also cannot
watch television for a long period of time because of his condition. Ahmad also cannot
expose to the direct cool temperature and cannot sleep too late. If he sleep late a night, his
body will react to it and then the seizure will come because he does not have an enough
sleep.
(Ahmad)
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.
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.
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
b. Social Stigma
Ahmad 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
that he has epilepsy. He shies to share with others about his condition because he scared
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
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.
seizures but I don’t know what the purpose that they see me
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 Activity
Beside 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
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.
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
All above discussion on social activity show that Ahmad need to reduce the social
activity.
d. Effect of medicine
There 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.
“Now I feel so sleepier even though I get enough sleep last night.
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
e. Relationship
Based 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
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
“My mum is very concern to me. Yet, when I have problem, I will
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.
to the right side and my body feel different. I quickly fight this
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
what epilepsy is even I don’t care about it… but until one day
that day I know what is epilepsy and I try to help Ahmad with his
situation” (Adam)
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
DISCUSSIONS
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
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
don‟t 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.
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.
Until 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 epilepsy because 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
(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
liaison services with medical institution and (4) advocacy. Yet, all these roles are related
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
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
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
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
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
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
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
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. I‟m 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
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
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
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