SIERRA LEONE

AND
EPILEPSY
"Advocating for Timely Identification, Management, and Public
Awareness of Epilepsy"
 By
Solomon G. Asfaha ( BSc Pharmacy )
Filmon Negusse MD
Alexander Habte MD
All Rights Reserved. No part of this work may be reproduced, stored in a
retrieval system, or transmitted in any form or by any means, electronic,
mechanical, photocopying, recording, or otherwise without appropriate
attribution to the authors.

This book can be used in part or fully for non commercial purposes especially in
initiatives that has community outreach programs with appropriate attribution to
the authors.

Solomon G. Asfaha, Filmon Negusse and Alexander Habte have the right to be
acknowledged as the principal authors of the book.
Ioncure’s Epilepsy Mission

Our mission is to eliminate the suffering due to epilepsy. At Ioncure, we are

committed to integrating all solutions for epilepsy, and working with local
experts, advocates, epilepsy societies, national and international organizations,
patients, and policymakers, to make this world a better place for epileptic
patients. At Ioncure, we are working on finding new cures for epilepsy through
drug discovery, surgeries, working towards providing proven diets and newer
culturally fit variations, music, art, meditation, exercise, dance, and retreats. We
are working towards better breathing and sleep, to reduce the seizure risk, and
sudden death due to epilepsy (SUDEP). We are working on the design of
everyday gadgets, furniture, and clothes to make the lives of epileptics with
fewer injuries. We are screening all medicinal plants for active ingredients, and
new molecules.

We are deeply passionate about cognitive and emotional challenges, new

educational aids, regimens, schools, counselors, and hospitals, as solutions to
the challenge. We are working on predicting seizures, and creating online audio
to record diaries for epilepsy in all major vernacular languages. We look
forward to working with all academics, various epilepsy societies, physicians,
advocates, hospitals, government agencies towards finding new cures of
epilepsy. In the coming years, Ioncure will open a local company in each
country.

We have also been creating several documentaries, video shorts, podcasts,

animations. My personal 20K digital artworks, and 2K multilayered physical
artworks are now with Ioncure and have been put up for fundraising for
epilepsy. In addition, Ioncure is now working on a few feature films to raise
awareness on epilepsy, and music in over 100 languages, with internationally
acclaimed traditional and classical musicians of Europe. At present, Ioncure is
having over two thousand physician scientists working.

The book also looks at the latest advances in automation and technology that are
helping to improve our understanding of epilepsy and develop new tools for
prevention and intervention. It examines the use of wearable devices, machine
learning algorithms, and other innovative technologies that are transforming the
way we approach epilepsy.

Whether you are a healthcare professional, researcher, advocate, or someone

living with epilepsy or caring for a loved one, this book will provide you with
valuable insights and information that can help you better understand and
manage it. In addition to authors, we at Ioncure have a team of 2000 plus
physicians and a few dozen data scientists, ready to spread epilepsy information
in all parts of the world.

Sukant Khurana, Ph.D.

Founder, and CEO, Ioncure

Chapter 1: Life and healthcare in Sierra
Leone
Introduction to Sierra Leone’s natural beauty and biodiversity

Sierra Leone, country of western Africa. The country owes its name to the 15th-
century Portuguese explorer Pedro de Sintra, the first European to sight and
map Freetown harbour. The original Portuguese name, Serra Lyoa (“Lion
Mountains”), referred to the range of hills that surrounds the harbour. The
capital, Freetown, commands one of the world’s largest natural harbours. Sierra
Leone is bordered with Guinea on the north and east, with Liberia on the south
by, and with the Atlantic Ocean on the west .

Sierra Leone can be divided into four distinct physical regions: the coastal
swamp, the Sierra Leone Peninsula, the interior plains, and the interior plateau
and mountain region. The coastal swamp region extends along the Atlantic for
about 200 miles. It is a flat, low-lying, and frequently flooded plain that is
between 5 and 25 miles wide and is composed mainly of sands and clays. Its
numerous creeks and estuaries contain mangrove swamps. Sandbars, generally
separated by silting lagoons, sometimes form the actual coast. The Sierra Leone
Peninsula, which is the site of Freetown, is a region of thickly wooded
mountains that run parallel to the sea for about 25 miles. The Peninsula
Mountains rise from the coastal swamps and reach some 2,900 feet at Picket
Hill.
Ethnic groups

There are about 18 ethnic groups that exhibit similar cultural features, such as
secret societies, chieftaincy, patrilineal descent, and farming methods.
The Mende, found in the east and south, and the Temne, found in the centre and
northwest, form the two largest groups. Other major groups include
the Limba, Kuranko, Susu, Yalunka, and Loko in the north; the Kono
and Kisi in the east; and the Sherbro in the southwest. Minor groups include the
coastal Bullom, Vai, and Krim and the Fulani and Malinke, who are immigrants
from Guinea concentrated in the north and east. The Creoles—descendants of
liberated blacks who colonized the coast from the late 18th to the mid-19th
century—are found mainly in and around Freetown. Throughout the 19th
century, blacks from the United States and West Indies also settled in Sierra
Leone. Ethnic complexity is further enhanced by the presence of Lebanese and
Indian traders in urban centres.

Economy of Sierra Leone

Sierra Leone is well known for its vast endowment in minerals which include
diamonds, rutile, bauxite, gold, iron ore, limonite, platinum, chromite, coltan,
tantalite, columbite, and zircon, as well as promising petroleum potential.
However, there were growing economic difficulties in the 1980s, including a
heavy external debt burden, escalating costs of food and fuel imports, and
erratic mineral-export production. Substantial devaluations of the national
currency, the leone, also occurred, and a series of economic stabilization
programs supported by the International Monetary Fund were initiated to
address these problems. Foreign investment, which centred on the mineral
sector, declined drastically after the start of the civil war in 1991. Bauxite and
rutile mines, the producers of most of the export earnings, closed in 1995. By
the time the war ended in 2002, much of the formal economy had been
destroyed, and the government was faced with the arduous task of rebuilding
the country’s economic infrastructure.
Mining has been the main source of the economy since independence and the
government has remained heavily dependent on mineral resources over the
years. Mining contributed 0.7 percent of Sierra Leone's GDP, constituted 65
percent of export earnings, and 3 percent to employment in 2018. The
government established the National Mineral Agency under the Ministry of
Mines and Mineral Resources in 2012, its mandate is to implement clear
policies and regulations, enhance transparency and accountability and ensure
mineral resources support economic and social development.

( Fig 1. Freetown, capital city of Sierra Leone, wikimedia commons - Simon

Jones [mifl68] )
According to a recent analysis by the African Development Bank Group on the
economic prospects for Sierra Leone, the impact of Russia's invasion of Ukraine
caused Real GDP growth to fall to 2.8% in 2022 from 4.1% in 2021. On the
demand side, mining exports (iron ore) and on the supply side, a resurgence in
important industries, were the main drivers of growth. Food and gasoline price
increases as well as the leone's devaluation caused inflation to increase from
11.9% in 2021 to 26.1% in 2022. Due to greater grants, the budget deficit
decreased to a projected 4.8% of GDP from 7.3% in 2021. From 79.8% of GDP
in 2021, the public debt is now predicted to be 92.9% of GDP. The nation
continues to be very vulnerable to debt crisis.
The current account deficit narrowed to an estimated to 10.3% of GDP from
15.0% in 2021, attributable to an improved trade balance and higher net
transfers. The current account deficit is financed by the financial account. Gross
foreign reserves fell to $599.5 million (3.3 months of import cover) in
September 2022 from $932 million in December 2021 following measures to
increase food and fuel supplies in local markets. The exchange rate depreciated
sharply after mid-2021 due mainly to the widening trade deficit.
The financial sector is underdeveloped but generally sound, with most
indicators above the recommended minimum, except the nonperforming loans
ratio (at 14.8% in 2021 against a regulatory target of 10%). Sierra Leone is
characterized by high poverty (59.2% in 2020), income inequality (Gini
coefficient of 0.357 in 2018), and high youth unemployment (70%),
compounded by skills mismatch.
In 2014, just 12 years after the end of the civil war, an Ebola epidemic broke out
in Sierra Leone, with disastrous consequences for the economy and society. The
country has yet to fully recover, and its development has been further set back
by the COVID-19 pandemic.
Sierra Leone at a Glance
o Population: > 7.9 million
o Per capita income: $1,670
o Life expectancy: F 56 / M 54 years
o Infant mortality rate: 75/1,000 live births
Tourist Attraction places

Sierra Leone has several tourist attractions a blend of natural wonders, cultural
heritage, and historical sites that make it a unique and great destination for
travellers. Here are some popular tourist destinations in Sierra Leone:
 Banana Islands: Located in the coast of Sierra Leone, the Banana Islands
are a group of islands known for their crystal-clear waters, and lush
greenery. It's a great place for snorkelling, fishing, and relaxation.
 Tacugama Chimpanzee Sanctuary: found near Freetown, the Tacugama
Chimpanzee Sanctuary is a haven for rescued chimpanzees. Visitors can
observe these fascinating primates in their natural habitat and learn about
conservation efforts.

 Outamba-Kilimi National Park: This national park, located in the

northwest part of Sierra Leone. It is home to diverse wildlife, including
elephants, hippos, monkeys, and various bird species.

 Bunce Island: has historical significance, Bunce Island was a major slave
trading post. It is a place to explore the ruins, learn about the transatlantic
slave trade, and reflect on this dark chapter in history.

 River Number Two Beach: is considered as one of the most beautiful

beaches in Sierra Leone, River Number Two Beach is famous for its
golden sands, palm trees, and beautiful surroundings. It's an ideal spot for
swimming, sunbathing, and beach picnics.
 ( Fig 2. Turtle Island, Sierra Leone - wikimedia commons by lienyuan lee )

Freetown

Sierra Leone's capital and largest city, Freetown, is situated on the Atlantic coast
of West Africa.
The Sierra Leone Company established Freetown as a community for
emancipated slaves in 1792. For people who had been freed from slave ships. It
functioned as a safe refuge. The city was a major player in the effort to put an
end to the transatlantic slave trade and developed into a hub for the British
abolitionist movement. Freetown evolved over time into a significant port and
regional commercial centre.

Freetown's population is estimated to be around 1.05 million people. Due to its

limited geographical area and the concentration of inhabitants in urban areas,
Freetown has a comparatively high population density. The city has grown
through time, and its population is still increasing, which is posing further
urbanisation and infrastructure problems.
Freetown experiences a tropical monsoon climate, which is characterised by
year-round high temperatures and humidity. A rainy season and a dry season are
the two main seasons of the city. Usually from May to October, the rainy season
brings a lot of rain and occasional thunderstorms. The significantly hotter dry
season lasts from November to April.

Health and welfare in Sierra Leone

During British colonialism, Sierra Leone served as the seat of Government for
other British colonies along the West Coast of Africa. The first college for
higher education south of the Sahara was established in 1827. The country is
well known for its early achievements in the fields of medicine, law and
education earning the name ‘the Athens of West Africa’.
Before the civil war, most health and welfare services were provided by the
central government. There were also a few hospitals belonging to religious
societies, mining companies, and doctors. Every district in the interior had at
least one hospital. The major hospitals with specialist facilities were in
Freetown and Bo. However, the destruction wrought by the civil war left the
health care system in shambles, with acute shortages of medical equipment and
supplies, medication, and trained medical personnel plaguing the country even
years after the end of the conflict. Life expectancy in Sierra Leone ranks among
the lowest in the world.
The Ministry of Health and Sanitation handles programs for the control and
eradication of malaria and other infectious or endemic diseases. In other areas
sanitation is under the control of district health authorities and town councils.
The National HIV/AIDS Secretariat of Sierra Leone was established in 2002.
The organization’s responsibilities include increasing awareness of the disease
and of methods of prevention, promoting research, and allocating resources for
treatment.

 Health care
Sierra Leone is situated on the coast of West Africa with a population of 7.4
million, of which at least 1 million live in the urban environs of the capital
Freetown. Its development has been hampered by a civil war between 1991 and
2002 and more recently by the Ebola outbreak of 2014, which claimed nearly
4000 lives, of whom over 90 were qualified health care workers (approximately
7% of the workforce).
The burden of disease is predominantly communicable disease, with 25% of
deaths due to malaria, 9% due to hypertension and 9% due to maternal
causes. In outpatients, the predominant conditions are tuberculosis, human
immunodeficiency virus, hepatitis, hypertension, and diabetes.
Ebola exacerbated an already challenging situation in terms of human resources.
There are 1.4 doctors, nurses and midwives per 10 000 population compared to
the most recent sustainable development goals threshold (set in 2016) of
44.5.3 In absolute terms, this equates to a qualified workforce of just over 1000
doctors, nurses and midwives, with an approximate shortage of 32 000. There is
only one medical school in the country from which approximately 30 graduates
pass out per year.
The Sierra Leone health care system is organised into two tiers of care:
Peripheral Healthcare Units (PHUs) with an extended community health
programme and secondary care which includes 21 district and three referral
hospitals; there are also 45 private clinics and 27 private hospitals, mostly in the
Freetown area. Most patients use traditional ‘country’ medicines as a first line
and present late to the government health service. The affluent use private
health care, either at home or abroad.
After the 2014–2016 West Africa Ebola outbreak, CDC supported Sierra
Leone’s development and implementation of an electronic reporting system for
priority diseases. Sierra Leone is the first African nation to fully transition from
a paper-based reporting system to an electronic system for weekly aggregate
disease reporting at the health facility level. This landmark achievement
increases efficiency in reporting, decreases data transmission turnaround time,
and helps organize data for use in outbreak detection and response. Following
the successful implementation of the electronic reporting system, CDC also
supported establishment of a case-based disease surveillance information
system (eCBDS) that reports case-level data and tracks epidemic-prone disease
outbreaks. The electronic reporting system and eCBDS are key assets to Sierra
Leone’s COVID-19 response.
  Maternal and child healthcare

Of the 20 countries with the highest incidence of maternal mortality, 19 of them

are located in Sub-Saharan Africa. Sierra Leone has the highest maternal
mortality rate in the world, and one of the highest mortality rates for children
under five.
The 2015 maternal mortality rate per 100,000 births for Sierra Leone is 1,360.
This is compared with 970 in 2010 and 1032 in 2008. The under 5 mortality
rate, per 1,000 births is 198 and the neonatal mortality as a percentage of under
5's mortality is 25. In Sierra Leone the number of midwives per 1,000 live births
is 1 and the lifetime risk of death for pregnant women 1 in 21. In 2010 the three
most prominent causes of death for children below the age of five years were
acute respiratory infections (17%), malaria (14%) and diarrhoea (14%). Other
contributory causes were prematurity (9%), intrapartum-related complications
(9%), measles (6%), neonatal sepsis (5%), congenital anomalies (4%) and
injuries (4%).

To address this issue and prevent death among children under age five, CDC
helped establish the Child Health and Mortality Prevention Surveillance
(CHAMPS) network in partnership with the Ministry of Health and Sanitation
(MOHS) and the Bill & Melinda Gates Foundation.

 Mental health

Mental health care in Sierra Leone is almost non-existent. Many Sierra

Leoneans have experienced traumatic events that are associated with negative
mental health outcomes. These include a decade-long civil war which ended in
2002 (during the Civil War ,many soldiers took part in atrocities and many
children were forced to fight. This left them traumatised), the 2014 Ebola
outbreak, and recurrent floods which in August 2017 caused a deadly mudslide
that left an estimated 1141 dead or missing (The World Bank, 2017).
Additionally, alcohol use is significantly higher than the regional average
(WHO, 2014).
Patients’ sufferers try to cure themselves with the help of traditional healers. an
estimated 400,000 people (by 2009) being mentally ill. Thousands of former
child soldiers have fallen into substance abuse as they try to blunt their
memories.
 Sierra Leone Top 10 Causes of Death
 Malaria
 Lower respiratory infections
 Neonatal disorders
 Ischemic heart disease
 Diarrheal diseases
 Stroke
 HIV/AIDS
 Congenital birth defects
 Tuberculosis
 Meningitis
(Source: GBD Compare 2019, Sierra Leone)

Government expenditure

In 2012, less than 17% of the country of Sierra Leone's health expenditures
were covered by the government. Patients paid for the remaining 83%, or it was
funded by other non-governmental organisations. In 2012, total health spending
made up 15.1% of GDP. Government spending came to US$16 per capita.

Government healthcare spending in 2013 was 1.6% of GDP. For every 100,000
people, there were 2 doctors, 17 nurses, and 7 midwives according to the most
recent survey, which was conducted between 1997 and 2010. Additionally, in
2013 83% of one-year-olds received a dose of the measles vaccine, and in 2010
61% of births were attended by qualified medical workers. In 2014, 62% of
people drank from an improved supply of drinking water, while 13% of people
had access to adequate sanitary facilities. There were 3 pharmaceutical workers
for every 100,000 people in Sierra Leone, according to the most recent survey,
which was conducted between the years 2000 and 2011..
Hospitals in Sierra Leone

There are about 80 hospitals in the public and private sectors in Sierra Leone.
The facilities include 17 government civilian hospitals, with a key private
hospital, Choithram, in Freetown. The largest mission hospital in the country is
the Emergency Hospital established by the Italian non-governmental
organisation (NGO) Emergency, and a key medical training facility is the
College of Medicine and Allied Health Sciences (COMAHS). There is also a
thriving market for traditional healers in Sierra Leone.

The Hospital Boards Act 2003, followed by the Hospital Boards Amendment
Act 2007, came into operation to ensure the better management of specified
hospitals and the provision of efficient medical care in the country. In 2010 the
government brought in the Free Healthcare Initiative for pregnant women,
breastfeeding mothers and children under five. Fees for medical attention were
abolished for these target groups, with drugs and treatment provided free of
charge in every public health facility in the country.

Health care infrastructure was severely damaged during the country’s civil war.
Many clinics were looted. International charities, such as the Red Cross, are still
very active in Sierra Leone, helping to plug gaps in health care until long-term
improvements can be made.

A fledgling pharmaceutical industry has sprung up in the last few years, but the
country still imports the vast majority of its drugs, with the Pharmacy Board
monitoring the quality of incoming medicines. Sierra Leone’s pharmaceutical
sector mainly consists of retailers, marketers, and local agents of the big
international pharmaceutical firms. The Pharmacy Board has been involved in a
series of efforts to stamp out the proliferation of counterfeit medicines, which
continue to pose a threat to the pharmaceutical industry and public health in the
entire region.

Organizations working to improve public health in Sierra Leone

Numerous organisations and projects are active in Sierra Leone with the goal of
enhancing healthcare, addressing issues with public health, and enhancing
human wellbeing.

Governmental Health Associations:

o Ministry of Health and Sanitation (MoHS): MoHS is the primary
government body responsible for formulating and implementing health
policies, providing healthcare services, and regulating the health sector in
Sierra Leone.
o National AIDS Secretariat (NAS): is responsible for coordinating the
national response to HIV/AIDS in Sierra Leone. It develops policies,
strategies, and programs to prevent and control HIV/AIDS, and works
with various stakeholders to ensure effective implementation.
o Sierra Leone Medical and Dental Association (SLMDA): is an
organization that represents medical and dental professionals in Sierra
Leone. It advocates for the welfare of healthcare workers, promotes
professional standards, and collaborates with the government and other
stakeholders to improve healthcare delivery.
o National Ebola Response Centre (NERC): was established during the
Ebola outbreak in 2014-2016 to coordinate and lead the country's
response to the epidemic. While its primary focus was on Ebola response,
it played a crucial role in strengthening overall health systems.

Non-Governmental Health Associations:

o Partners In Health (PIH) is an international non-profit organisation that
collaborates with the government of Sierra Leone to improve healthcare
delivery and infrastructure. They concentrate on expanding access to
excellent healthcare, especially for disadvantaged groups.
o Wellbody Alliance: This non-profit organisation runs community-based
programmes and medical clinics in Sierra Leone. With a focus on
maternity and child health specifically, they offer medical care, health
education, and community outreach services to underprivileged
communities.
 o Campaign for Good Governance (CGG): This Sierra Leonean civil
society group promotes transparency and good governance in the health
sector. They seek to promote citizen engagement in healthcare decision-
making, oversee the provision of healthcare services, and assure
transparency.
o The Family Homes Movement (FHM) is an independent nonprofit that
promotes maternal and child health. They offer medical services,
encourage education about reproductive health, and support programmes
aiming at lowering mother and newborn death rates in Sierra Leone.

Sierra Leone and Epilepsy

Epilepsy rates are high in Sierra Leone due to birth trauma, meningitis &
malaria; local studies suggest rates as high as 2%, equating to as many as
120,000 people. There is still little understanding of epilepsy, especially in rural
areas: it is rarely diagnosed, medication is scarce, and sufferers often face
devastating social exclusion, with profound educational and livelihood
consequences, contributing significantly to their poverty. Children with epilepsy
are extremely vulnerable; mortality rates are high, due to the condition and
associated neglect.
Misunderstandings about the condition, how it is caused and how it may be
treated often leads to discrimination. People very often experience isolation and
exclusion from their families and their communities.
With the right type and dosage of anti-epileptic medication, about 70% of
people with epilepsy can have their seizures completely controlled. We have
numerous examples from the clinics of patients in their thirties and forties who
have had seven or eight seizures a day all their life – and who are now seizure-
free as a result of medication. Treatment is transforming people’s lives: most of
those who attend the clinic have never been to school, have no source of income
and do not have children. Their lives have been lived predominantly in social
and economic isolation. Many patients presenting at the clinics have extensive
burns and project partner the Epilepsy Association of Sierra Leone (EASL)
reports that large numbers of its membership have sustained injury through an
epileptic seizure, with burns from open cooking fires being the greatest danger.
The average person waits 6.5 years from their first epileptic seizure before
seeking medical attention. A total of 48% of school age children stopped
attending school due to their epilepsy. Over half (54%) believed that epilepsy
was caused by demons or bad spirits. As well as causing dangerous delays to
treatment, such beliefs can lead to harmful alternative treatments and depression
and associated mental health problems for those affected.

Associations work on epilepsy in Sierra Leone:

There are organizations and units work to improve the understanding of

epilepsy, reduce stigma, increase access to treatment and support services, and
promote research and awareness about epilepsy in Sierra Leone.

1. Sierra Leone Epilepsy Association (SLEA): SLEA is a non-governmental

organization dedicated to supporting individuals with epilepsy and raising
awareness about the condition in Sierra Leone. They provide education,
advocacy, and support services for people living with epilepsy and their
families.
2. International League Against Epilepsy (ILAE) Sierra Leone Chapter: is
a global organization focused on advancing the understanding and treatment of
epilepsy. The Sierra Leone chapter of ILAE collaborates with healthcare
professionals, researchers, and stakeholders to improve epilepsy care and
promote research in the country.
3. Sierra Leone Association of Neurologists (SLAN): is an association that
includes neurologists working in Sierra Leone. While their focus extends
beyond epilepsy, they play a crucial role in diagnosing and managing epilepsy
cases, as well as providing specialized care and treatment.
4. Non-Communicable Diseases (NCD) Unit, Ministry of Health and
Sanitation: The NCD Unit of the Ministry of Health and Sanitation in Sierra
Leone oversees the country's efforts to address non-communicable diseases,
including epilepsy. They work towards improving access to epilepsy treatment,
raising awareness, and integrating epilepsy care into the broader healthcare
system.
5. Medical Assistance Sierra Leone developed as a strategic response to the
overwhelming need for access to quality health care in Sierra Leone.

The first clinical epilepsy service in Sierra Leone

In February 2010, Medical Assistance Sierra Leone and Consultant Neurologist

Dr Lisk of Basildon Hospital with the Epilepsy Association of Sierra Leone
established the first functioning clinical epilepsy service in Sierra Leone. There
was no such facility in the country.
A network of sixteen clinics are now established across the country. Over 5,000
people are now registered and receiving treatment for epilepsy through this
initiative, and MASL is providing three of the four anti-epileptic drugs used in
this programme. A national education and awareness-raising programme brings
forward patients for treatment and enables the provision of support and advice
through an Epilepsy Support Worker based in each district of the country.
Dr Radcliffe Lisk, the most known Sierra Leonean-born consultant neurologist
working in the UK, took an unpaid sabbatical to establish the nation's first
epilepsy clinic so that Sierra Leone's patients of the condition might finally
access appropriate healthcare and have hope for a better life. Dr. Lisk has built a
nationwide network of epilepsy clinics and seen to it that hundreds of medical
personnel have received training on how to identify the illness, provide
emergency care, and refer complex cases. He is the most known doctor in Sierra
Leone on the field of epilepsy.
References

1. https://www.britannica.com/place/Sierra-Leone
2. https://en.m.wikipedia.org/wiki/Sierra_Leone
3. Sierra Leone - GHS Index
4. Sierra Leone Economic Outlook | African Development Bank Group - Making a
Difference (afdb.org)
5. https://borgenproject.org/9-facts-about-healthcare-in-sierra-leone/
6. https://en.m.wikipedia.org/wiki/Healthcare_in_Sierra_Leone
7. https://www-ibe--epilepsy-org.cdn.ampproject.org/v/s/www.ibe-
epilepsy.org/epilepsy-association-of-sierra-leone-easl-meet-the-ibe-chapter/
amp/?amp_gsa=1&amp_js_v=a9&usqp=mq331AQIUAKwASCAAgM
%3D#amp_tf=From%20%251%24s&aoh=16886720668098&referrer=https
%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fwww.ibe-
epilepsy.org%2Fepilepsy-association-of-sierra-leone-easl-meet-the-ibe-chapter
%2F
8.https://www.omicsonline.org/associations/
Epilepsy_Association_of_Sierra_Leone/
9. https://www.masierraleone.org.uk/epilepsy-support/
10. https://www.centreforpublicimpact.org/case-study/free-healthcare-sierra-
leone
11.https://commons.m.wikimedia.org/wiki/
Category:Hospitals_in_Sierra_Leone
12. https://infosierraleone.jimdo.com/health-care/hospitals/

Chapter 2: Epilepsy
Epilepsy: An introduction

( Fig 3. Epilepsy. Image created by

bing.com )

Epilepsy is a neurological disorder characterized by recurrent and unprovoked

seizures. It is a chronic condition that affects the brain's electrical activity,
leading to abnormal and excessive discharges of neurons. These abnormal
electrical discharges can cause a wide range of symptoms, including seizures,
loss of consciousness and control of bowel or bladder function, unusual
sensations, or involuntary movements that may involve a part of the body
(partial) or the entire body (generalized).
Factors such as heredity, brain damage, infections, or other underlying medical
disorders can all contribute to the frequency, severity, and length of seizures in
epilepsy.
It's important to note that epilepsy is a diverse condition, and its causes,
symptoms, and severity can differ significantly from one individual to another.
Some people may experience seizures occasionally, while others may have
frequent and more severe episodes.
Epilepsy can occur at any age, from infancy to old age. However, there are
certain age groups where it is more commonly diagnosed. The incidence and
prevalence of epilepsy vary across different age groups:
 A. Early Childhood: Epilepsy can start in infancy and early childhood.
Seizures that begin in this age group might be caused by various factors,
including birth injuries, genetic conditions, or structural abnormalities in
the brain.
B. Childhood and Adolescence: Epilepsy can also develop during childhood
and adolescence. Some cases may be related to genetic factors, while
others might result from head injuries, infections, or other brain-related
issues.
C. Young Adulthood: The risk of developing epilepsy remains elevated
during the early adult years. This age group might experience epilepsy
due to various factors, such as head injuries, infections, tumors, or drug-
related causes.
D. Middle and Older Age: Epilepsy can also arise in middle-aged and older
individuals. In this age group, it may be associated with conditions like
stroke, dementia, brain tumors, or age-related brain changes.
While epilepsy can occur at any age, some specific epilepsy syndromes are
more common in particular age groups. For example, febrile seizures (seizures
triggered by high fever) are more common in young children, while juvenile
myoclonic epilepsy (JME) often manifests during adolescence.

History of epilepsy

The history of seizures and epilepsy may date back to prehistoric times, perhaps
as early as the late Palaeolithic period. Beliefs on the causes of seizures
coincided with the prevailing concept of religion and medicine of that era, with
ideas changing over time from a magical to scientific explanation.
A 4000-year-old Akkadian tablet found in Mesopotamia; inscribed on it is a
description of a person with "his neck turning left, hands and feet are tense, and
his eyes wide open, and from his mouth froth is flowing without him having any
consciousness".
Nearly a millennium later, the Late Babylonians wrote a diagnostic manual
entitled, Sakikku, which included texts describing epilepsy. In this guide, the
Babylonians describe several seizure types and categorized them based on their
presentation. They also had some understanding of prognostics, as the text
detailed different outcomes depending on the type of seizure, including poor
outcomes in status epilepticus, as well as post-ictal states in other seizure types.
Hippocrates was essentially one of the first to suggest that epilepsy is inherited
rather than contagious and to link it to the brain. He described the clinical
manifestation as unilateral motor symptoms with an aura, which could act as a
warning so they could flee the scene before they started convulsing. At the time,
a lot of people believed that spirits caused epilepsy, which added to the stigma
attached to the ailment. He claims that the "divine fear" that society has instilled
about epilepsy is what has led to its misinterpretation and the way society reacts
to it. Hippocrates was one of the first to identify a nonreligious origin of
epilepsy.

During the 19th century, with the changing attitudes about epilepsy, patients
suffering from the disease were segregated from criminals and the insane in
asylums, leading to the development of dedicated colonies and hospitals to care
for these patients in western Europe and America. This allowed clinicians to
closely observe them and introduce a new lexicon to describe seizures.
The understanding of epilepsy substantially enhanced with the development of
EEG in the late 19th and early 20th centuries, which was accompanied by
increasingly precise clinical descriptions. Further evidence for the distinction
between "focal" and "generalised" was provided by the discovery of two distinct
categories of epileptiform EEG patterns.
Even though epilepsy is still not fully understood in the modern world, a variety
of efficient treatments are now readily available. We can continue to deepen our
understanding of epilepsy and try to improve the outcomes for those who live
with the condition via continued research and education.

Symptoms of Epilepsy

Seizures can affect people in different ways, depending on which part of the
brain is involved.
Possible symptoms include:
 Uncontrollable jerking and shaking, called a "fit”.
  Loss of awareness and staring blankly into space becoming stiff
 Strange sensations, such as a "rising" feeling in the tummy, unusual
smells, or tastes,
 Tingling feeling in your arms or legs.
 Sudden falling or stumbling and collapsing.
 Loss of control of bowel or bladder function
 Mood changes or sudden feelings of fear, anxiety, or pleasure.
It's crucial to remember that people with epilepsy may have a wide range of
distinct symptoms. Each person may experience seizures differently in terms of
type, frequency, length of time, and intensity. Additionally, some people may
experience very small seizures that could go unreported without a medical
checkup.

Types of epilepsy

1. Generalized Epilepsy Syndromes:

- Juvenile Myoclonic Epilepsy (JME): Typically begins in adolescence and
is characterized by myoclonic jerks (brief muscle twitches) upon waking, along
with generalized tonic-clonic seizures.
- Absence Epilepsy: Primarily affects children and involves brief lapses in
consciousness, often accompanied by subtle body movements like blinking or
lip-smacking.
- Tonic-Clonic (Grand Mal) Epilepsy: Involves generalized tonic-clonic
seizures with loss of consciousness, stiffening of muscles (tonic phase),
followed by rhythmic jerking (clonic phase).
2. Focal Epilepsy Syndromes (Partial Epilepsy):
- Temporal Lobe Epilepsy (TLE): The most common type of focal epilepsy,
originating in the temporal lobes of the brain. It can cause complex focal
seizures with altered awareness or simple focal seizures without loss of
consciousness.
 - Frontal Lobe Epilepsy: Focal seizures originating in the frontal lobes,
leading to various motor and behavioural manifestations.
- Occipital Lobe Epilepsy: Focal seizures arising from the occipital lobes,
affecting vision, and causing visual hallucinations or other visual disturbances.
- Parietal Lobe Epilepsy: Focal seizures originating in the parietal lobes,
which can cause sensory disturbances or altered perceptions.
3. Benign Rolandic Epilepsy (Benign Epilepsy with Centrotemporal
Spikes): Primarily affects children and is characterized by focal seizures
involving the face, mouth, or throat. Seizures often occur during sleep and tend
to resolve with age.
4. Landau-Kleffner Syndrome (LKS): A rare epilepsy syndrome that affects
children, leading to language regression and behavioural changes due to
electrical discharges in the brain during sleep.
5. Lennox-Gastaut Syndrome (LGS): A severe epilepsy syndrome typically
appearing in early childhood, characterized by multiple seizure types,
intellectual disability, and specific EEG patterns.
6. Dravet Syndrome (Severe Myoclonic Epilepsy of Infancy): A rare and
severe form of epilepsy that begins in infancy, causing febrile seizures and later
other types of seizures, along with developmental delays.
7. West Syndrome (Infantile Spasms): A specific epilepsy syndrome
occurring in infancy, featuring clusters of brief seizures called infantile spasms,
often associated with developmental regression.
8. Rasmussen's Encephalitis: A rare and progressive form of epilepsy,
characterized by focal seizures, cognitive decline, and inflammation in one
hemisphere of the brain.

Worldwide Prevalence of Epilepsy

Epilepsy affects about 50 million individuals worldwide, making it one of the

most prevalent neurological conditions worldwide.
Between 4 and 10 per 1000 people are thought to be affected by active epilepsy
at any given moment, defined as having ongoing seizures or needing treatment.
Each year, epilepsy affects an estimated 5 million people worldwide. Epilepsy is
thought to be diagnosed in 49 out of every 100,000 people annually in high-
income countries. This number can reach 139 per 100 000 in low- and middle-
income nations. This is likely due to the increased risk of endemic conditions
such as malaria or neurocysticercosis; the higher incidence of road traffic
injuries; birth-related injuries; and variations in medical infrastructure, the
availability of preventive health programmes and accessible care. Nearly 80%
of people with epilepsy live in low- and middle-income countries.
People with epilepsy tend to have more physical problems (such as fractures
and bruising from injuries related to seizures), as well as higher rates of
psychological conditions, including anxiety and depression. Similarly, the risk
of premature death in people with epilepsy is up to three times higher than in
the general population, with the highest rates of premature mortality found in
low- and middle-income countries and in rural areas.
Three quarters of people with epilepsy living in low-income countries do not get
the treatment they need.
It is estimated that up to 70% of people living with epilepsy could live seizure-
free if properly diagnosed and treated. Discontinuing anti-seizure medicine can
be considered after 2 years without seizures and should take into account
relevant clinical, social and personal factors.
In many parts of the world, people with epilepsy and their families suffer from
stigma and discrimination. People with epilepsy can experience reduced access
to educational opportunities, a withholding of the opportunity to obtain a
driving licence, barriers to enter particular occupations, and reduced access to
health and life insurance. In many countries legislation reflects centuries of
misunderstanding about epilepsy, for example, laws which permit the
annulment of a marriage on the grounds of epilepsy and laws that deny people
with seizures access to restaurants, theatres, recreational centres, and other
public buildings.
The global burden of disease, which is based on years of life lost to early
mortality and time spent in less-than-optimal health, includes years lost to
epilepsy and is greater than 0.5% of the total. In terms of medical expenses,
preventable deaths, and lost labour productivity, epilepsy has a major economic
impact. Households may be significantly burdened by unexpected expenses and
productivity declines.

Epidemiology of Epilepsy in Africa

According to the World Health Organisation (WHO), 80% of the estimated 25

million epileptics in Africa reside in low- and middle-income nations.
Unfortunately, patient care and assistance are insufficient despite the significant
impact this disease has on Africa.
With a high prevalence and incidence rate, epilepsy is a serious public health
issue in Africa. The epidemiology of epilepsy in Africa differs significantly
amongst the various nations and populations examined. Epilepsy prevalence in
diverse African nations has been found in several research to range from 0.5%
to 10%. However, it is widely believed that these figures may be underestimated
due to underdiagnosis and underreporting of the disease. For instance, Ghana
has an estimated prevalence of 7.9%, while Tanzania has a prevalence as high as
10%. In terms of incidence, studies have reported rates ranging from 20 to 50
per 100,000 people per year in different African countries. For example, Ghana
has an estimated incidence of 40 per 100,000 people per year, while Ethiopia
has an estimated incidence of 30 per 100,000 people per year. Nigeria, South
Africa, and other countries have estimated incidence rates of 27 and 25 per
100,000 people per year, respectively.
Socioeconomic factors such as poverty and lack of access to healthcare are
significant challenges for people with epilepsy in Africa. Poverty leads to
difficulty accessing diagnostic tools and treatments for epilepsy, and people
living in poverty cannot afford to travel to healthcare facilities or take time off
work to seek medical care. In addition, the shortage of trained healthcare
professionals such as neurologists and epileptologists, coupled with an
overburdened healthcare system and poor quality of care, makes it difficult for
people with epilepsy to receive appropriate care and treatment.
In Africa, epilepsy is a serious public health issue. It is vital to address the
issues at hand and take advantage of available options for better condition
management and treatment. A comprehensive strategy that includes a variety of
tactics, including raising awareness and education, promoting accessibility to
diagnostic equipment and treatments, encouraging interdisciplinary
collaborations, and supporting epilepsy research in Africa, is required to
improve the lives of people with epilepsy in that continent.
The challenges associated with epilepsy management in Africa include limited
access to diagnostic tools and treatments, inadequate care coordination, and a
lack of disease awareness and understanding. Given that Africa is home to
culturally and socioeconomically diverse populations, these unique challenges
must be addressed when developing interventions for epilepsy care. In addition,
studying epilepsy in Africa can provide valuable insights into managing the
disease, particularly regarding cultural and socioeconomic factors that differ
from other regions. Such insights can help develop culturally appropriate and
effective interventions to enhance the quality of life of people with epilepsy in
Africa.

Diagnosing epilepsy

Diagnosis of epilepsy requires the expertise of a qualified healthcare

professional, typically a neurologist or epileptologist. The process involves
considering multiple factors, including the individual's clinical presentation,
seizure characteristics, diagnostic test results, and other relevant information.
Epilepsy takes patience. It isn’t something that happens in one office visit.

 Medical History: A thorough medical history is crucial in the diagnosis

of epilepsy. The healthcare provider will gather information about the
individual's symptoms, seizure episodes, their frequency, duration, and
any triggers or warning signs. They will also inquire about the
individual's medical and family history, as well as any potential risk
factors or underlying conditions.
 Physical Examination: A physical examination helps assess overall
health and may reveal any neurological abnormalities or other signs
related to seizures or underlying causes. The healthcare provider will
evaluate motor function, reflexes, coordination, and sensory responses.
  Electroencephalogram (EEG): EEG is a fundamental diagnostic tool for
epilepsy. It records the electrical activity of the brain using electrodes
placed on the scalp. The EEG helps identify abnormal electrical patterns
or epileptic discharges that occur during seizures or between seizures.
Prolonged or video EEG monitoring may be necessary to capture and
analyse seizures that occur infrequently.
 Neuroimaging: Imaging studies of the brain, such as magnetic resonance
imaging (MRI), computed tomography (CT), or positron emission
tomography (PET), may be conducted to detect any structural
abnormalities, tumors, scars, or other factors that may contribute to
seizures.
 Blood Tests: Blood tests may be performed to identify any underlying
medical conditions or metabolic disorders that could cause or contribute
to seizures. These tests can check for electrolyte imbalances, infections,
genetic factors, or other abnormalities.
 Neuropsychological Testing: Neuropsychological assessments may be
conducted to evaluate cognitive function, memory, attention, and other
cognitive abilities. This helps determine the impact of seizures on
cognitive and behavioural aspects.

Common wearable devices to detect Epilepsy

Why are epilepsy devices helpful?

For someone who has epilepsy, seizures that are not noticed are just as
concerning as those that are. This is particularly true for seizures that a person
can experience while sleeping.
Utilizing drugs and other interventions to prevent seizures is the aim of epilepsy
treatment. However, it is conceivable for someone to believe their epilepsy is
under control but still experience seizures at night.
The possibility of sudden unexpected death in epilepsy (SUDEP) is another
concern associated with seizures. This happens when a person has a seizure and
then unexpectedly dies. Changes in respiration (such as something choking the
person) or cardiac rhythms can be a factor, even though the exact causes are
unknown. Thus, it is essential to use a wearable device to detect seizure and
inform patients' caregivers for assistant to prevent or relieve adverse
consequence.

 Epilert is a waterproof wearable device that detects and monitors

epilepsy seizures using biometry and machine learning (Epilepsy
Monitoring Unit).
 Embrace2 is FDA-cleared wrist-worn wearable in epilepsy. It detects
possible convulsive seizures and instantly alerts caregivers, whether
they're sleeping next door or are living miles away.
Other examples: Divoti Sport ID Medical Alert Bracelet
Emfit Movement Monitor
SAMi-3 camera and SOS Smartwatch
Epilepsy Causes and Risk Factors

 Age (for children and older adults, the risk of developing epilepsy is
higher.)
 Premature birth or low birth weight
 Trauma during birth (such as lack of oxygen)
 Seizures in the first month of life
 Abnormal brain structures at birth
 Bleeding into the brain
 Abnormal blood vessels in the brain
 Serious brain injury or lack of oxygen to the brain
 Brain tumors
 Infections of the brain such as meningitis or encephalitis
 Stroke resulting from blockage of arteries.
 Cerebral palsy
 Mental disabilities
 Seizures occurring within days after head injury
 Family history of epilepsy or fever-related seizures
 Alzheimer's disease (late in the illness)
 Lengthy fever-related (febrile) seizures
 Alcohol or drug abuse

Pathophysiology of epilepsy

Abnormal brain electrical activity that results in recurring seizures is part of the
pathophysiology of epilepsy. There are several important elements that affect
how seizures begin and spread, despite the fact that the precise mechanisms
behind epilepsy are not yet fully known. An outline of epilepsy's pathogenesis is
provided below:
Neuronal Excitability and Hyperexcitability: The complex balancing act
between excitatory and inhibitory messages among neurons is essential for the
brain's normal operation. A state of hyperexcitability results from an imbalance
in epilepsy favouring excessive excitatory activity or diminished inhibitory
activity.
Ion Channel Dysfunction: Ion channels play a critical role in controlling the
flow of ions (such as sodium, potassium, and calcium) across neuron
membranes, regulating their electrical activity. Mutations or dysregulation of
ion channels can lead to increased neuronal excitability and abnormal firing
patterns, contributing to the development of seizures.
Brain structural abnormalities: including brain tumours, scars from prior head
trauma, deformities, and developmental anomalies, can disturb healthy neural
networks and cause epileptogenesis.
Inflammation and Neurochemical Changes: The susceptibility of the brain to
seizures can be influenced by inflammatory processes and changes in
neurochemical signalling. Normal neuronal function can be impaired and
hyperexcitability promoted by inflammatory reactions brought on by
autoimmune diseases, brain infections, or other illnesses.

Medications in epilepsy

The treatment and management of epilepsy frequently involves the use of

medications, also referred to as antiepileptic drugs (AEDs) or antiseizure
medications. In order to prevent or reduce seizures, these drugs function by
lowering or controlling abnormal electrical activity in the brain. There are many
drugs available, and the selection of a medication is based on a number of
factors, including the nature of the seizures, the epileptic syndrome, a person's
features, and any underlying diseases.
 Phenytoin
 Valproate
 Gabapentin
 Lamotrigine
 Levetiracetam
 Carbamazepine
 Topiramate
 Oxcarbazepine
 Ethosuximide
 Clonazepam
Surgery in epilepsy

Surgery for epilepsy is an option when medications do not control seizures, a

condition known as medically refractory epilepsy or drug-resistant epilepsy. The
goal of epilepsy surgery is to eliminate seizures or limit their severity with or
without the use of medications. There are two surgical categories: diagnostic
and therapeutic.
In some cases, surgery is not possible. Seizures may come from multiple brain
areas, or the risk on brain function may be too high.

Deep brain stimulation in epilepsy

Deep brain stimulation (DBS) is a neurointerventional technique that involves

implanting electrodes and a pacemaker-like device to deliver pulses of
electricity to specific areas of the brain. Although the mechanism of action
remains to be fully elucidated, it is suggested that DBS acts via focal
modulation of specific functional circuits within the brain. DBS is a
neuromodulatory treatment used in patients with drug-resistant epilepsy (DRE).

(Fig. Deep brain stimulation from wikimedia commons -

http://www.nimh.nih.gov/health/topics/brain-stimulation-therapies/brain-stimulation-therapies.shtml )
The importance of accurate and timely diagnosis in epilepsy

For the condition to be managed and treated effectively, epilepsy must be

diagnosed accurately and quickly. A variety of symptoms and seizure patterns
can occur with epilepsy, a complex neurological disease. Clinical decision-
making and patient outcomes can both be enhanced by early and accurate
diagnosis.
In order to effectively manage epilepsy, monitoring and follow-up are crucial.
Patients with epilepsy require routine assessments to gauge their response to
therapy, spot any side effects, and modify treatment regimens as necessary.
Identifying triggers, detecting changes in seizure patterns, and modifying the
treatment strategy as needed are all made possible by accurate monitoring.
The management of epilepsy requires early intervention. Long-term problems,
such as cognitive decline, physical harm, and psychological suffering, can result
from untreated or ineffectively controlled seizures. Clinicians can detect
patients who are not responding to treatment or who are suffering negative side
effects and quickly modify treatment regimens with the aid of proper
monitoring and follow-up.
Doctors can spot changes in the patient's condition through monitoring and
modify their treatment strategy as necessary. Doctors can obtain better seizure
control and raise the patient's quality of life by carefully observing how a
patient responds to medicine and changing the dosage or medication type.

Improving patient engagement in epilepsy

Enhancing epilepsy patient participation is essential for improving treatment

outcomes and overall patient satisfaction. The following techniques and
methods can help increase patient involvement in epilepsy care:
 Education and Information: Provide comprehensive and easily
understandable information about epilepsy, including causes, symptoms,
available treatment options, and self-management strategies.
  Clear Communication: Ensure effective and open communication
between healthcare providers and patients. Encourage patients to ask
questions, express concerns, and provide feedback.
 Self-Management Tools: Offer resources and tools that enable patients to
actively manage their epilepsy, such as seizure diaries, medication
reminder apps, or wearable devices for tracking seizures.
 Telehealth and Remote Monitoring: Utilize telehealth technologies to
provide convenient access to healthcare professionals, particularly for
patients who face geographical or mobility constraints.
 Multidisciplinary Care: Engage a multidisciplinary team of healthcare
professionals, including neurologists, epilepsy nurses, psychologists, and
social workers. Collaborative care ensures that patients receive
comprehensive support and access to various resources, promoting a
holistic approach to epilepsy management.

Alternative therapies in epilepsy

Although medication and, occasionally, surgery are the mainstays of epilepsy

treatment, some people with the condition additionally use alternative remedies.
Some research points to the possibility that certain lifestyle modifications may
improve epilepsy management.
o Ketogenic Diet: The ketogenic diet is a high-fat, low-carbohydrate, and
adequate-protein diet. The ketogenic diet has been used to treat epilepsy
for nearly 100 years. Studies show it helps prevent seizures in children
whose epilepsy isn't well-controlled with medicine. This diet might also
help adults with epilepsy, but more research is needed.
o Acupuncture: Acupuncture is a traditional Chinese medicine practice
involving the insertion of thin needles into specific points on the body.
o Yoga: It combines exercise with deep breathing and meditation to
strengthen your body and calm your mind. Some studies show yoga could
help cut the number of seizures you get and improve your overall well-
being.
o Meditation: In this relaxation technique, you breathe deeply, sometimes
while repeating a word or phrase. Meditation helps steer your mind away
 from thoughts that stress you out. One form in particular, mindfulness
meditation, may help relieve stress. Because stress can be a trigger for
seizures, it could help reduce them. But more research is needed.
o Herbal and Dietary Supplements: Certain herbal and dietary
supplements have been studied for their potential effects on epilepsy. For
example, cannabidiol (CBD), a non-intoxicating compound derived from
cannabis, has shown promise in reducing seizures in certain forms of
epilepsy.
o Dance, art, and music therapies may also have a positive impact on
epilepsy outcomes by providing an outlet for emotional expression,
reducing stress, and promoting relaxation.
The above-mentioned complementary therapies shouldn't be utilized in place of
conventional medical care, despite the fact that they may be beneficial for some
patients. Before initiating any new therapy or changing their treatment plan,
patients should always speak with their healthcare professionals.

References

1.https://www.who.int/news-room/fact-sheets/detail/
epilepsy#:~:text=Epilepsy%20is%20a%20chronic%20noncommunicable,
%2D%20and%20middle%2Dincome%20countries
2. Epilepsy Foundation https://www.epilepsy.com › seizure-...-Types of
Seizures
3. WHO Fact Sheet https://en.wikipedia.org/wiki/Epilepsy
4.Thirteen Epilepsy Myths
https://www.valleychildrens.org/blog/epilepsy-13-epilepsy-myths-busted
5. Myths and Misconceptions
https://epilepsyfoundation.org.au/understanding-epilepsy/about-
epilepsy/myths-and-misconceptions/
6.Stigma, epilepsy and quality of life
https://pubmed.ncbi.nlm.nih.gov/12609301/
7. Understanding epilepsy > Diagnosis https://www.epilepsy.com/
8.Exams and Tests https://medlineplus.gov/ency/article/000694.htm
9.Diagnosis https://www.nhs.uk/conditions/epilepsy/
10.How is epilepsy diagnosed
https://www.healthline.com/health/epilepsy#triggers
11. Epilepsy Foundation https://www.epilepsy.com › seizure-... Seizure
Medication List
12. NHS > Treatment for epilepsy
https://www.nhs.uk/conditions/epilepsy/treatment/
13. Anti epileptic drugs
https://emedicine.medscape.com/article/1187334-overview
14. https://www.webmd.com/epilepsy/medications-treat-seizures
15.https://www.mayoclinic.org/diseases-conditions/epilepsy/diagnosis-
treatment/drc-20350098
16.Epilepsy surgery
https://www.mayoclinic.org/tests-procedures/epilepsy-surgery/about/pac-
20393981
17.Neuromodulation in epilepsy
(https://www.thelancet.com/journals/laneur/article/PIIS1474-
4422(21)00300-8/fulltext
18.Neuromodulation for refractory epilepsy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8832352/
19.Neuromodulation treatment in epilepsy
https://www.sciencedirect.com/science/article/abs/pii/S01492918203027
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20. Epilepsy treatment
https://www.nhs.uk/conditions/epilepsy/treatment/#:~:text=Treatments
%20include%3A,that%20can%20help%20control%20seizures
21. Managing epilepsy
https://www.cdc.gov/epilepsy/managing-epilepsy/index.htm
22. Lifestyle modification
https://www.epilepsy.com/manage/managing-triggers/lifestyle-
modifications
23. Lifestyle changes to manage epilepsy
https://epilepsydisease.com/lifestyle-changes
24. Risk, safety, and lifestyle
https://epilepsyfoundation.org.au/managing-epilepsy/young-people-and-
epilepsy/risks-safety-and-lifestyle/
25. Edwards CA, Kouzani A, Lee KH, Ross EK. Neurostimulation
Devices for the Treatment of Neurologic Disorders. Mayo Clin Proc
2017;92:1427-1444

26. Jolleen Zembe, Flavia Senkubuge, Tanita Botha & Tom Achoki
Population health trends analysis and burden of disease profile
observed in Sierra Leone from 1990 to 2017.

27. Helen Hopwood1, Stephen Sevalie, Moshi Optat Herman, Dawn

Harris1, Katharine Collet, Abdulai Jawo Bah and Fenella Beynon, The
burden of mental disorder in Sierra Leone: a retrospective observational
evaluation of programmatic data from the rollout of decentralised nurse-
led mental health units.

28. Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR.

Estimation of the burden of active and life-time epilepsy: a meta-analytic
approach. Epilepsia. 2010;51(5):883–90.
CHAPTER 3: RISKS IN EPILEPSY

Individuals with epilepsy encounter various challenges due to their condition.

The most significant concern revolves around the occurrence of seizures, which
can pose hazards such as injuries, falls, burns, or even fatal consequences in
severe situations. Apart from these health-related challenges, seizures can also
lead to status epilepticus, a condition that harms the brain and affects cognitive
abilities.
Epilepsy can also have an adverse effect on a person's social and psychological
health, resulting in feelings of loneliness, anxiety, sadness, and low self-esteem.

SUDEP: An introduction

Sudden unexpected death in epilepsy (SUDEP) is defined as the sudden,

unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death
of patients with epilepsy with or without evidence of a seizure, excluding
documented status epilepticus, and in whom postmortem examinations do not
reveal a toxicological or anatomic cause for death. It is a significant concern
within the epilepsy community. It mainly affects people who have uncontrolled
or poorly controlled seizures.
Ambiguity exists regarding the precise mechanisms behind SUDEP. Research,
however, indicates that it might be connected to changes in brain and cardiac
function during or after a seizure. Respiratory compromise, irregular cardiac
rhythms, and autonomic dysfunction are potential causes of SUDEP.

History of SUDEP
Sudden Unexpected Death in Epilepsy (SUDEP) was first described and
recognized as a distinct entity in the medical literature in the 19th century.
However, it wasn't until the late 20th century that SUDEP gained more attention
and research focus.
Historical records indicate that sudden deaths associated with epilepsy have
been recognized for centuries. Reports of individuals with epilepsy dying
suddenly and unexpectedly date back to the early medical literature.
In the 19th century, physicians began describing sudden deaths in individuals
with epilepsy as a specific condition. These cases were distinguished from
deaths resulting from obvious causes such as trauma or status epilepticus.
In the late 20th century, there was a growing awareness of SUDEP among the
medical community. Researchers started investigating the phenomenon and
exploring potential mechanisms and risk factors. Advances in technology, such
as improved monitoring techniques and data collection, contributed to the
increased understanding of SUDEP.
SUDEP gained public attention through efforts by advocacy organizations and
initiatives aimed at raising awareness about the condition. These efforts focused
on educating individuals with epilepsy, their families, and healthcare providers
about the risks and preventive measures associated with SUDEP.

Diagnosis of SUDEP

Diagnosing Sudden Unexpected Death in Epilepsy (SUDEP) is challenging

because it is a diagnosis of exclusion, meaning that other potential causes of
death must be ruled out.
The diagnosis of SUDEP requires a multidisciplinary approach involving
medical examiners, epileptologists, neurologists, and other specialists to
evaluate the various aspects of the case and consider all available information.

Global prevalence of SUDEP

Sudden unexpected death in epilepsy has been reported in many populations,
from young children to the elderly. A higher odds ratio for SUDEP has been
reported in patients seen in an epilepsy centre, as well as those with refractory
epilepsy, those cared for in a residential care facility, and patients referred for
epilepsy surgery. There is a higher odds ratio for SUDEP in males and people
with childhood-onset epilepsy.
Large-scale studies from the USA and Europe have identified higher rates of
SUDEP in populations with socioeconomic barriers to care, including lack of
employment, lack of access to medications and other treatments, and increased
distance from appropriate healthcare providers. SUDEP has been described in a
variety of epilepsies, including generalized and focal epilepsy types, but based
on recent population-based studies, an increased risk has not been observed in
patients purely with absence or myoclonic seizures.
A study in Sweden showed that patients with generalized tonic clinic seizures
(GTCS) had a tenfold increased risk of SUDEP, and the majority of patients
lived alone. A twofold increased risk of SUDEP was seen in individuals with a
previous diagnosis of substance abuse or alcohol dependence.
To give a more comprehensive picture of the occurrence of SUDEP, systematic
reviews and meta-analyses combine data from many studies. Based on these
reviews, the prevalence of SUDEP has been estimated to be between 1.2 and 2.8
per 1,000 person-years.
It is crucial to remember that the prevalence of SUDEP can change depending
on the epilepsy population being researched, the standard of healthcare, the
availability of epilepsy specialists, and the degree of epilepsy management.
Additionally, prevalence statistics could vary according on age groups, epilepsy
syndromes, and seizure kinds.

Underestimation of SUDEP cases

Knowing is half the battle to ultimately eliminate SUDEP, but incomplete

recognition limits the scope of our knowledge. SUDEP cases are frequently
underreported for a variety of reasons. Since SUDEP is still poorly known,
many cases could be misdiagnosed or categorised as other causes of death, like
cardiac arrest or unintentional injury. A lack of uniform reporting guidelines for
SUDEP instances may potentially cause inconsistent data gathering and
reporting. Additionally, due to stigma or concern over possible legal
ramifications, some families and healthcare professionals could be reluctant to
disclose SUDEP instances. Patients who have not yet received an epilepsy
diagnosis may experience SUDEP cases, which could result in underreporting in
databases dedicated to epilepsy. Due to these reasons, the true prevalence of
SUDEP is probably higher than what is reported.

Risk factors for SUDEP

There are several risk factors that may raise the possibility of Sudden
Unexpected Death in Epilepsy (SUDEP). It's crucial to remember that the
presence of these risk factors does not necessarily indicate that SUDEP is going
to happen, but they can help identify those who might be at higher risk. Several
well-known risk factors for SUDEP include the following:
 Uncontrolled or Poorly Controlled Seizures: Individuals with epilepsy
who have frequent or uncontrolled seizures are at higher risk of SUDEP.
 Generalized Tonic-Clonic Seizures: The risk of SUDEP is higher in
individuals who experience generalized tonic-clonic seizures (also known
as grand mal seizures).
 Seizure Frequency: Increased seizure frequency, especially multiple
seizures within a short period (cluster seizures), has been associated with
a higher risk of SUDEP.
 Early Age of Epilepsy Onset: Onset of epilepsy at an early age,
particularly during childhood or adolescence, has been identified as a risk
factor for SUDEP.
 Long Duration of Epilepsy: Individuals with a longer duration of epilepsy
have a higher risk of SUDEP compared to those with a shorter duration.
 Medication Non-Adherence: Poor adherence to prescribed anti-epileptic
medications or failure to take medications as directed can increase the
risk of seizures and potentially contribute to a higher risk of SUDEP.
 Sleep-Related Seizures: Seizures that occur during sleep or shortly after
awakening, known as sleep-related seizures, have been associated with a
higher risk of SUDEP.
SUDEP Risk inventories

SUDEP risk inventories, often referred to as SUDEP risk assessment tools or

checklists, are organized tools used by healthcare professionals to examine and
evaluate Sudden Unexpected Death in Epilepsy (SUDEP) in people with
epilepsy.
SUDEP and Seizure Safety Checklist (SSC): Developed by the Epilepsy
Foundation, the SSC is a comprehensive tool that assesses various risk factors
associated with SUDEP. It includes sections on seizure control, medication
management, seizure types, nocturnal seizures, and additional risk factors such
as intellectual disability and comorbidities. The checklist helps guide
discussions and develop personalized risk reduction strategies.
Liverpool SUDEP Risk Checklist: Developed by researchers at the University
of Liverpool, this checklist is widely used to assess SUDEP risk. It covers
factors such as seizure frequency, nocturnal seizures, generalized tonic-clonic
seizures, medication compliance, comorbidities, and additional risk factors. The
checklist provides a risk stratification based on low, moderate, or high-risk
categories.
SUDEP Risk Assessment Checklist: Developed by researchers at the University
of Michigan, this checklist focuses on assessing specific risk factors associated
with SUDEP. It includes items related to seizure control, seizure types,
nocturnal seizures, adherence to medications, and other relevant factors. The
checklist helps identify individuals at higher risk and facilitates discussions on
risk reduction strategies.
Stichting Epilepsie Instellingen Nederland (SEIN) Risk Inventory: This risk
inventory was developed by SEIN, a Dutch epilepsy center. It evaluates various
factors such as seizure frequency, nocturnal seizures, seizure types, medication
adherence, and additional risk factors. It assists in identifying individuals with
epilepsy who may be at increased risk of SUDEP.
Causes of SUDEP

The exact cause of SUDEP remains unclear, but it is believed to be linked to

disruptions in the brainstem's respiratory and/or cardiac function during or after
a seizure. Seizures may trigger sudden changes in heart rate and blood pressure,
leading to heart arrhythmias, or they may suppress breathing, causing reduced
oxygen supply to vital organs. Other factors such as antiepileptic drug use,
underlying health conditions, and inadequate seizure control might also play a
role.

SUDEP and respiratory failure

Seizure-related respiratory dysfunction may play a critical role in the

pathophysiology of sudden unexpected death in epilepsy (SUDEP). In the
majority of observed SUDEP cases, there is some evidence of breathing
difficulty prior to death. In addition, simultaneous recording of respiratory
function in patients undergoing video-EEG monitoring has shown that
abnormalities, such as hypoxemia, apnea, and hypercarbia, are commonly seen
following seizures.

How seizures affect respiration is not well understood. While brainstem

structures are necessary for breathing, cortical structures, especially in the
frontal and temporal lobes, may exert significant influence. These cortical
regions are also common sites for seizure initiation or propagation, suggesting a
possible anatomical link between seizures and breathing dysfunction.

SUDEP and Cardiac arrythmia

Cardiac arrhythmia is considered one of the potential factors associated with

Sudden Unexpected Death in Epilepsy (SUDEP). It refers to abnormal heart
rhythms that can disrupt the normal pumping function of the heart. In some
cases, seizures can trigger sudden changes in heart rate and blood pressure,
potentially leading to cardiac arrhythmias.
During a seizure, there may be autonomic disturbances and alterations in the
electrical activity of the heart, which can result in irregular heart rhythms. These
arrhythmias, if severe or sustained, may compromise the heart's ability to pump
blood effectively and can contribute to the occurrence of SUDEP.

SUDEP and brain activity

It is believed that disruptions in brain activity, particularly in vital regions of the

brain involved in autonomic control and vital functions, may contribute to the
occurrence of SUDEP.
During a seizure, abnormal electrical discharges in the brain can spread and
affect various regions, potentially including those responsible for regulating
vital functions such as breathing and heart rhythm. This can lead to disruptions
in respiratory and cardiac function, which are thought to be critical factors in
SUDEP.
Additionally, postictal brain activity, which refers to the period immediately
following a seizure, may play a role in SUDEP. The brain may undergo transient
changes during this time, including alterations in autonomic regulation and vital
functions. This postictal state may render individuals vulnerable to respiratory
and cardiac abnormalities, increasing the risk of SUDEP.

Pathophysiology of SUDEP

The pathophysiology of Sudden Unexpected Death in Epilepsy (SUDEP) is not

completely understood and is a topic of ongoing research. However, several
potential mechanisms have been proposed to contribute to the occurrence of
SUDEP.
One significant factor is cardiorespiratory dysfunction. Seizures c trigger
autonomic changes, such as fluctuations in heart rate and blood pressure, as well
as respiratory disturbances. These disruptions can lead to cardiac arrhythmias,
inadequate oxygenation, and impaired ventilation, potentially contributing to
SUDEP. The interplay between cardiac and respiratory dysfunction is believed
to play a crucial role in SUDEP cases.

Another important aspect is the postictal suppression. Following a seizure, there

can be a transient suppression of brain activity, including the respiratory centers
in the brainstem. This can result in breathing abnormalities, reduced oxygen
supply to vital organs, and an increased risk of SUDEP. The postictal period is
considered a vulnerable time where respiratory complications can arise.

Central apnea, which refers to the cessation of breathing due to a lack of

respiratory drive from the central nervous system, has also been implicated in
SUDEP. Seizures can cause a temporary suppression of breathing, leading to
episodes of central apnea that increase the risk of SUDEP. The disruption of
normal respiratory patterns during seizures can have fatal consequences.

Genetics of SUDEP

The genetic basis of Sudden Unexpected Death in Epilepsy (SUDEP) is an area

of ongoing research. Genetic factors are believed to contribute to the risk of
SUDEP in some individuals with epilepsy.
Variations genes involved in cardiac ion channels and autonomic regulation
have been studied as potential genetic contributors to SUDEP risk. However, the
specific genetic mechanisms underlying SUDEP are not yet fully understood,
and further research is needed to unravel the complex genetic factors associated
with this condition.
 SCN1A: Variations in the SCN1A gene, which codes for a sodium
channel protein important in neuronal excitability, have been associated
with an increased risk of SUDEP in individuals with Dravet syndrome
and other severe epilepsy syndromes.
  KCNH2: Variations in the KCNH2 gene, encoding a potassium channel
protein involved in cardiac electrical signalling, have been linked to an
increased risk of SUDEP, particularly in individuals with epilepsy and
long QT syndrome.
 SCN5A: Mutations in the SCN5A gene, responsible for a sodium channel
protein in the heart, have been associated with cardiac arrhythmias and an
increased risk of SUDEP.
 KCNQ1: Variations in the KCNQ1 gene, involved in potassium channel
function, have been studied in relation to SUDEP, particularly in
individuals with epilepsy and cardiac abnormalities.
 ABCC9: Variants in the ABCC9 gene, which codes for a cellular
transporter protein, have been implicated in cardiac-related SUDEP cases,
particularly in individuals with epilepsy and structural heart
abnormalities.
 PRICKLE1: Mutations in the PRICKLE1 gene have been found in
individuals with SUDEP and have been associated with abnormal
brainstem development and autonomic dysfunction.

The need of genetic biomarkers for SUDEP

The development of validated reliable genomic biomarkers for SUDEP has the
potential to transform the clinical treatment of epilepsy by pinpointing patients
at risk of SUDEP and allowing optimized, genotype-guided therapeutic and
prevention strategies. Although many general risk factors for SUDEP have been
identified, the development of reliable patient-specific biomarkers for SUDEP is
needed to provide more accurate risk prediction and personalized patient
management strategies. The Epilepsy Foundation SUDEP Institute desires the
development of clinically relevant, specific and sensitive biomarkers of SUDEP
and near-SUDEP to facilitate the development of a therapeutic intervention for
people at high risk.
To help identify persons at greater risk of SUDEP and in need of closer
monitoring, biomarkers are needed. Candidate biomarkers include
electrocardiographic, electroencephalographic, and imaging abnormalities
observed more frequently in those who have died suddenly and unexpectedly.
Anti-SUDEP techniques

There are several anti-SUDEP techniques and strategies aimed at reducing the
risk of Sudden Unexpected Death in Epilepsy (SUDEP). These techniques focus
on various aspects, including seizure control, lifestyle modifications, and
supportive measures. Here are some examples:
Seizure Management: Optimizing seizure control is crucial in reducing the risk
of SUDEP. This involves working closely with healthcare professionals to
develop an effective treatment plan, including appropriate antiepileptic
medications, dosages, and adherence to the prescribed regimen.
Seizure Detection and Alert Devices: The use of seizure detection and alert
devices can provide an added layer of safety. These devices can monitor
physiological changes associated with seizures, such as heart rate, movement, or
brain activity.
Sleep Safety Measures: Since seizures are more likely to occur during sleep,
implementing sleep safety measures is important. This may involve having a
bed partner, using protective padding, or ensuring a safe sleeping environment
to reduce the risk of injuries during seizures.
Medication Adherence: Consistent and proper adherence to prescribed
antiepileptic medications is crucial for seizure control and reducing the risk of
SUDEP. It is important to take medications as prescribed, follow dosage
instructions, and communicate any concerns or side effects with healthcare
providers.
Lifestyle Considerations: modifying the way of living can help lower your
chances of developing SUDEP. These consist of leading a healthy lifestyle,
controlling stress, getting enough sleep, abstaining from substances like alcohol
and recreational drugs that might reduce seizure thresholds, and eating a
balanced diet.
Education and Support: It's crucial to offer people with epilepsy and their
families education and support. They must be informed about SUDEP, its risk
factors, and the significance of seizure control.
Elimination of SUDEP

SUDEP prevention remains a big challenge. Except for low-quality evidence of

preventive effect of nocturnal supervision for SUDEP, no other evidence-based
preventive modality is available. Other potential preventive strategies for
SUDEP include reducing the occurrence of generalized tonic–clonic seizures
using seizure detection devices, detecting cardiorespiratory distress through
respiratory and heart rate monitoring devices, preventing airway obstruction
(safety pillows), and reducing central hypoventilation using selective serotonin
reuptake inhibitors and adenosine and opiate antagonists. However, none of the
above-mentioned modalities has been proven to prevent SUDEP.

Medico-legal aspect of SUDEP and the role of epilepsy advocates

The convergence of medical and legal issues related to Sudden Unexpected

Death in Epilepsy (SUDEP) instances is referred to as the medico-legal element
of SUDEP. It entails a review of the medical evidence, documentation, and legal
implications surrounding the death of a person with epilepsy.
Epilepsy advocates are individuals or organizations that work to raise
awareness, promote understanding, and advocate for the rights and needs of
people with epilepsy. These advocates play a crucial role in educating the
public, reducing stigma, supporting research efforts, and influencing policies to
improve the lives of individuals with epilepsy.

The importance of post-mortem examination

A post-mortem examination, also known as an autopsy, is the examination of a

body after death. The aim of a post-mortem is to determine the cause of death.
Post-mortems are carried out by pathologists (doctors who specialise in
understanding the nature and causes of disease).
Post-mortems provide useful information about how, when, and why someone
died. They enable pathologists to obtain a better understanding of how diseases
spread.
Post-mortem examinations contribute to medical research and advancements in
understanding epilepsy and related conditions. The findings obtained from these
examinations can provide valuable insights into the underlying mechanisms,
risk factors, and potential treatments for epilepsy. This knowledge can
ultimately lead to improved management and prevention strategies.
Post-mortem examinations can provide important data for public health
initiatives and prevention efforts. Identifying specific factors or patterns in
epilepsy-related deaths can help identify high-risk populations, refine
prevention strategies, and improve overall public health interventions.

Informing patients and family about SUDEP

Many healthcare providers are hesitant to discuss SUDEP because of the

perception of evoking unnecessary fear in patients while others argue that
informing patients about SUDEP may enhance patient compliance,
improve seizure control, and aid in saving lives.
Patients and caregivers feel it is their right to be informed about SUDEP,
irrespective of evoked fear.
Patient education regarding SUDEP may play a key role in encouraging
modifying lifestyle factors that lower seizure threshold and facilitate more
aggressive interventions in patients with pharmacoresistant epilepsy.
Patients and their families can work together with healthcare professionals to
develop strategies aimed at reducing seizure risk and promoting overall health
while being mindful of the potential risk of SUDEP. This may involve following
medication schedules as prescribed, adopting a healthy lifestyle, avoiding
triggers that can provoke seizures, and seeking prompt medical assistance in the
event of seizure-related symptoms.

Dealing with SUDEP

It is essential to recognize and address the grief and emotional impact that
comes with the loss of a loved one to SUDEP. Seek support from family,
friends, support groups, or mental health professionals who can provide a safe
space to express feelings, process emotions, and offer guidance through the
grieving process.
Maintain open and honest communication with healthcare providers, sharing
any concerns or changes in seizure patterns promptly. Engage in discussions
about SUDEP and ask questions to gain a better understanding of individual
risks and preventive strategies.
Adopt a healthy lifestyle that includes regular exercise, adequate sleep, stress
management, and a balanced diet. Certain lifestyle factors, such as poor sleep
habits or excessive stress, can trigger seizures and potentially increase the risk
of SUDEP.
Connect with epilepsy support groups, advocacy organizations, and online
communities. These networks can provide a sense of belonging, opportunities to
share experiences, and access to valuable resources. Engaging in advocacy
efforts can help raise awareness about SUDEP and drive advancements in
epilepsy care and research.

SUDEP evolvement in UK, US, Canada, Australia

Across these countries, there has been a shift towards improved education,
patient empowerment, and preventive strategies related to SUDEP. Healthcare
providers are increasingly incorporating discussions about SUDEP into routine
epilepsy care to ensure individuals and their families are informed and can take
appropriate measures to minimize the risk.
In the UK, SUDEP has received significant attention, leading to the
establishment of dedicated organizations and initiatives.
Additionally, the National Institute for Health and Care Excellence (NICE)
guidelines in the UK emphasize the need to inform people with epilepsy and
their families about SUDEP and provide appropriate support and risk reduction
strategies.
The US has seen increased attention and research on SUDEP in recent years.
The American Academy of Neurology (AAN) and the American Epilepsy
Society (AES) have developed guidelines on SUDEP awareness and risk
reduction strategies for healthcare professionals.

Organisations in Canada including the Canadian Epilepsy Alliance and Epilepsy

Canada have been actively advocating efforts for education, support, and
research as well as raising awareness of SUDEP.

Australia has made strides in improving epilepsy care and spreading awareness
of SUDEP. Data on epilepsy-related fatalities, including SUDEP, are gathered
by the Australian Bureau of Statistics in order to track trends and guide public
health initiatives.

Australia's universities and research institutions are actively involved in the

study of SUDEP, adding to the global understanding of its processes and
prevention.

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Epilepsy Foundation