This document discusses epilepsy and its impact on human rights and quality of life. It notes that epilepsy accounts for 0.75% of the global burden of disease and results in economic costs including lost productivity. People with epilepsy often face discrimination and social stigma. They may experience reduced access to health insurance, driving licenses, and some occupations. Legislation is needed to prevent discrimination and improve access to healthcare and quality of life for those with epilepsy. The document also discusses factors that impact quality of life such as seizure frequency, medication side effects, psychological issues, social functioning, academic achievement, and family stress. Mortality is higher for those with epilepsy due to a variety of causes that differ between countries depending on available resources and conditions.

2. Epilepsy
and
human
rights

3. Reference:
http://www.who.int/mediacentre/factsheets/fs999/en/
http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf

4. Epilepsy has significant economic
implications in terms of health care needs,
premature death and lost work productivity.
http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf

5. Epilepsy accounts for 0.75%, of the global
burden of disease, a time-based measure
that combines years of life lost due to
premature mortality and time lived in less
than full health.
In 2012, epilepsy was responsible for
approximately 20.6 million disability-
adjusted life years (DALYs) lost.
http://www.who.int/mediacentre/factsheets/fs999/en/

6. An Indian study conducted in 1998 calculated
that the cost per patient of epilepsy treatment
was as high as 88.2% of the country’s per
capita Gross National Product (GNP), and
epilepsy-related costs, which included
medical costs, travel, and lost work time,
exceeded $2.6 billion/year (2013 USD).

7. http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf

8. Although the social effects vary from country to
country, the discrimination and social stigma that
surround epilepsy worldwide are often more difficult
to overcome than the seizures themselves.
People living with epilepsy can be targets of
prejudice. The stigma of the disorder can
discourage people from seeking treatment for
symptoms, so as to avoid becoming identified with
the disorder.
http://www.who.int/mental_health/neurology/epilepsy/epilepsy_global_toolkit.pdf

9. Reference:
http://www.who.int/mediacentre/factsheets/fs999/en/

10. People with epilepsy can experience
Reduced access to health and life
insurance,
a withholding of the opportunity to obtain a
driving license, and
 Barriers to enter particular occupations,
among other limitations.

11. In many countries legislation reflects centuries of
misunderstanding about epilepsy. For example:
In both China and India, epilepsy is commonly
viewed as a reason for prohibiting or annulling
marriages.
In the United Kingdom, laws which permitted
the annulment of a marriage on the grounds of
epilepsy were not amended until 1971.
In the United States of America, until the
1970s, it was legal to deny people with
seizures access to restaurants, theatres,
recreational centers and other public buildings.

12. Legislation based on internationally accepted
human rights standards can
Prevent discrimination and rights violations,
improve access to health-care services,
and
Raise the quality of life for people with
epilepsy.

13. Reference:
- Austin, J.K. Quality of Life in Children with Epilepsy. In: Pellock, J.M (ed.) Pediatric Epilepsy
Diagnosis and Therapy. New York: Demos Medical Publishing; 2008. p. 838-845.
- http://www.ncbi.nlm.nih.gov/books/NBK100593/
- Leppik, I.E. Epilepsy and Quality of Life. In: Shulman, L.M (ed.) Epilepsy A Guide to Balancing
Your Life. Demos Medical Publishing: ; 2007. p. 123-127.

14. It refers to a patient’s (and sometimes his or her
caregiver’s) perceptions of the patient’s state of
functioning and well-being across multiple areas of
concern. In children these domains most commonly
include those related to physical, psychological, and
social functioning and well-being.
According to the World Health Organization (1996),
“Quality of life is defined as individuals' perceptions of
their position in life in the context of the culture and
value systems in which they live and in relation to
their goals, expectations, standards and concerns”

15. In general, research comparing quality of life
across different chronic conditions indicates
that children and adolescents with epilepsy
have a relatively high physical quality of
life, but fare much worse in the
psychological and social quality-of-life
domains.

16. 1. Epilepsy and Treatment
• Neurologic functioning
• Cognitive functioning
Attention, memory, abstract reasoning,
• psychomotor functioning
• Epilepsy syndrome
Seizure type, seizure frequency
• Anti epilepsy medication effects
Physical, cognitive, and behavioral side effects

17. 2. Psychological
• Emotional status
Happiness and satisfaction
Anxiety, depression, behavioral problems,
and psychiatric disturbance
• Self-esteem
• Feelings about epilepsy
Concerns and fears
Attitude toward having epilepsy
Perceptions of stigma

18. Psychological impact:
 Epidemiologic studies indicate that children
with epilepsy are up to 4.8 times more likely to
have mental health problems than children
from the general population.
 A meta-analysis of 46 studies found that
internalizing problems such as anxiety,
depression, and social withdrawal were more
common in children with epilepsy than
externalizing problems such as aggression
or delinquency

19. 3. Social
• Completion of age-appropriate
psychosocial developmental tasks
• Satisfaction with family relationships
• Peer relationships
• Engagement in activities
Sports, clubs, hobbies, teams, organizations

20. Social impact
Children with epilepsy have problems with
developing independence.
Children with epilepsy who were 3 to 6 years old
showed fewer age-appropriate social skills.
Children with epilepsy ages 8 to 16 were found to
have significantly lower social skills (cooperation,
assertion, responsibility, and self-control) compared
to healthy children.
In a somewhat older group, youth ages 11 to 18 with
epilepsy had poorer social competence, with girls
having significantly less social competence than
boys.

21. Epilepsy and sport
 There is little or no evidence that physical
fatigue such as that experienced in
strenuous activity will lead to a seizure.
 But, sports that involve the potential for
serious injury from loss of consciousness
should be avoided.
 These include sports in which the body
does not have contact with the ground,
such as skydiving.

22.  Also, sports that carry a high risk for head injury
should be avoided. Location and surroundings
also play a role.
 Swimming, if done in a well-lighted pool with
lifeguard or others aware of the swimmer’s
epilepsy, is possible. On the other hand,
swimming in a river or lake should be avoided.

23. Some years ago, the American Medical
Association’s Committee on Medical
Aspects of Sports published the following
statement:
“There is ample evidence that patients with
epilepsy will not be affected by indulging in
any sport, including football, provided the
normal safe-guards for sports participation
are followed, including adequate head
projection.”

25. Epilepsy and work
 With the exception of certain occupations, a
person with epilepsy should be able to work
at any job for which they have the ability.
 There are only a few job categories which are
closed to the person with epilepsy.
 These are ones which involve public safety.
For example, piloting an aircraft, driving a
large truck, being in a combat zone, or
working as an emergency service provider.

26.  Sometimes the condition which caused the epilepsy
may also be associated with limits in the brain’s
ability to work normally.
 The most common problem faced by many persons
with epilepsy is memory loss.
 This is because the temporal lobes are the structures
which process memory, and are also the areas of the
brain most likely to be the source of complex partial
seizures.
 The right temporal lobe usually processes memory
for pictures and maps (visual memory). The left
temporal lobe processes memory for speech (verbal
memory).
 So, work will depend on the individual abilities and
skills

27. 4. School
• Academic achievement
Learning problems
• Adaptive characteristics
Works hard, behaves appropriately

28. Scholastic impact
Academic performance in children with
epilepsy has consistently been found to be
poorer than would be expected by intellectual
ability.
In one study children with uncomplicated
epilepsy were, on average, about 1 year
delayed in overall reading ability and that
approximately 20% demonstrated severe
deficits

29.  Compared to children with other chronic
health conditions, siblings, and control
groups, children with epilepsy are at
increased risk for mental health conditions
such as depression and attention problems.
 Some studies have found that seizure type
and frequency are related to academic
achievement.
 Neurologic dysfunction is another potential
cause of academic problems in children
with epilepsy.

30. 5. Family
• Seizure-management skills
• Psychological adjustment to epilepsy
Concerns and fears
Attitude toward epilepsy in child
Perceptions of stigma
Supervision of child’s activities
• Leisure activity participation

31. Family impact
• Families of children with epilepsy consistently
fare worse than control families in relation to
parent-child interaction, maternal negative
mood, and overprotection.
• Families of children with epilepsy experience
relatively more stress, which has been found
to be related to child behavior problems.
• in a 2-year prospective study an increase in
parental emotional support to the child was
associated with a decrease in internalizing
behavior problems.

32. Reference:
Tobjörn Tomson. Preventing Death in Epilepsy. http://www.ilae.org/visitors/Publications/Epigraph-
2015-1-winter.cfm

33.  Epilepsy accounts 0.4% of total deaths in
2012 ( WHO global estimates 2012)
 It is well recognized that people with
epilepsy have a much greater morality rate
than the general population. In recent
years Sudden Unexpected Death in
Epilepsy (SUDEP) has received much,
and appropriate, attention, but its causes
and a solution for this great tragedy
remain elusive.

34. In epilepsy there are many contributors to
higher mortality. In some cases, the
underlying cause of the epilepsy is
progressive and fatal and in other cases,
while rare, the treatment itself, often from a
drug reaction results in an early death.

35. Status Epilepticus, especially in regions with
poor emergency services, can also be a
major cause.
Suicide, on the other hand, is an often
underestimated or unrecognized cause of
death in people with epilepsy and is no
doubt associated with the high prevalence of
depression among these individuals.

36. The mortality varied greatly across countries
and that the causes of death were different
and related to the conditions in each country.
For example, in rural China drowning is the
overwhelming primary cause of death (about
45% of all epilepsy-related deaths) among
people with epilepsy, whereas in Kenya
Status Epilepticus caused almost 40% of
all epilepsy associated deaths

37. Figure 1. Causes of epilepsy-related deaths in four different countries. The figure emphasizes the issues that
need to be addressed to reduce mortalities vary across cultures and resources. Of note, in Sweden, the risks
also shift with age, with suicide being a leading cause among younger patients.