Epilepsy is a common medical disorder that can have a psychological and emotional
impact on people with the disorder and their families. It is an ancient disorder.
The earliest detailed account of epilepsy can be found in Charaka Samhita dated 400
BC where epilepsy is being referred as Apasmara which means loss of consciousness
and discusses both symptomatology and possible treatments for the same. Acharya Sushruta
(600 BC), regarded as the father of surgery, also described various causes of apasmara.
Its mention can also be found in British Museum, London as a part of a Babylonian
text on medicine, Sakikku (All diseases), which was written over 3000 years ago, i.e.
before 1000 BC.[1]
Later Hippocrates stated about Epilepsy, “This disease is in my opinion no more divine
than any other; it has the same nature as other diseases, and the cause that gives
rise to individual diseases. It is also curable, no less than other illnesses unless
by long lapse of time it be so ingrained as to be more powerful than the remedies
that are applied”.[2] Both Charaka and Hippocrates believed that epilepsy has natural cause and not a
sacred or supernatural one. During 17th and 18th centuries epilepsy was the topic
of debate, which led to the development of modern neurology in the 19th century.
Epilepsy is under-recognized and often poorly funded with regard to clinical care
and research. Therefore there is poor availability of treatment options for people
with epilepsy around the world.
Current world population is approximately 7.28 billion. According to the WHO more
than 50 million people worldwide have epilepsy and nearly 80% of the people with epilepsy
are found in developing countries where annual new cases are between 40 per 100,000
to 70 per 100,000 people in the general population. In developing countries, this
figure is often close to twice as high. The estimated proportion of the general population
with active epilepsy at a given time is between 4 per 1000 and 10 per 1000 people.
However, some studies in developing countries suggest that the proportion is between
6 per 1000 to 10 per 1000.[3]
In the Global Burden of Disease Study 2010 survey, of almost 14,000 people from a
range of global settings severe epilepsy was rated as having a disability adjusted
life years (DALY) of 0.657 and total prevalent cases were 28,300,000.[4] Disease burden for epilepsy has been evaluated in economic terms by the European
Brain Council for the European countries, with data from 2004[5]
[6] and 2010,[7] based on epidemiological and health economic data which amounts to 161 and 212 million
euros, respectively.
It is estimated that there are more than 10 million persons with epilepsy in India.
Its prevalence is about 1% in our population.[8] The prevalence is higher in the rural (1.9%) compared to urban population (0.6%).[9]
[10] It is estimated in various studies that the overall prevalence of epilepsy in India
is 5.59–10 per 1000.[8]
[10]
[11]
[12]
Various epilepsy days celebrated across the world are:
|
Region/Country
|
Date
|
Organizers
|
|
National Epilepsy Day
|
India
|
17th November, started in 1991
|
Started with proposal of Doctors Eddie Bharucha & Piloo Bharucha of Indian Epilepsy
Association
|
|
Latin American Epilepsy Day
|
Latin America
|
9th September, started in 2000
|
A global campaign against epilepsy of International Bureau of Epilepsy (IBE) & International
League Against Epilepsy (ILAE)
|
|
National Epilepsy Day
|
South Africa
|
21st June, started in 2003
|
Started by Epilepsy South Africa organization
|
|
National Doodle Day for Epilepsy
|
United Kingdom
|
1st Friday of February/March, started in 2004
|
Charity Epilepsy Action as an annual fund raising event
|
|
Purple Day
|
Canada
|
26th March, started in 2008
Started in March 2011 in India
|
Started by Cassidy Megan of Nova Scotia, Canada
|
|
European Epilepsy Day
|
Europe
|
Second Monday February, started in 2011
|
An initiative of the Joint Task Force of IBE and ILAE against epilepsy
|
The Indian Epilepsy Association (IEA) was registered in 1970. In the late 1960s it
was decided by some members of Neurological Society of India (NSI) to form a separate
body to address issues related to epilepsy. Dr Anil D Desai, Dr Eddie P Bharucha and
Dr Noshir H Wadia went about to form a new society named Indian Epilepsy Association,
without disturbing the constitution of NSI. Indian Epilepsy Association was registered
on 21st of March 1970 in Bombay. The members of first Governing council were Dr Baldev
Singh, Dr B Ramamurthi, Dr TK Ghosh, Dr EP Bharucha, Dr AD Desai, Dr NH Wadia, Dr
KV Mathai, Dr KS Mani and Mrs Roshan H Dastur. The first meeting was held on 27th
of January 1971 where Dr Baldev Singh was appointed as Chairman, Dr Eddie P Bharucha
as Secretary General and Dr (Miss) FN Kohiyar as Treasurer. Initially IEA was affiliated
to both IBE and ILAE. However, both IBE and ILAE did not agree for one association
to be affiliated to two bodies. Hence an independent body, Indian Epilepsy Society
(IES) was formed in 1997 which was affiliated to ILAE. Indian Epilepsy Association
continued its affiliation to IBE.
In the General Body Meeting of IEA held at Indore on 16 December 1990, Dr Eddie Bharucha
and Dr Piloo Bharucha proposed a nationwide program on one particular day to create
awareness. Their proposal was supported by other members and it was finally decided
to celebrate 17 November of every year as National Epilepsy Day (NED). From 2015 onwards,
the NED will be replaced by International Epilepsy Day.
National Epilepsy Day 2014 was celebrated across the country in Vizag, Kochi, Madhya
Pradesh, Jaipur, Uttar Pradesh and Tirupati.
An executive meeting by IBE & ILAE was held on June 27, 2014, in Stockholm, wherein
after voting, it was decided that the second Monday of February should be celebrated
as International Epilepsy Day, which has also been the European Epilepsy Day (EED)
since 2011. The date is close to the celebration of Valentine's Day. It is a commonly
held belief that St. Valentine had epilepsy. International Epilepsy Day, a joint initiative
created by IBE and ILAE. This year it was celebrated across 138 countries on 9th of
February and will be celebrated globally on 2nd Monday of February to promote awareness
of Epilepsy and emphasize need for advancement in health care and research. International
Bureau of Epilepsy and International League Against Epilepsy invited participants
from all over the world to design perfect logo for the International Epilepsy Day
campaign.
The winner of the competition for International Epilepsy Day logo was Mr Masgustian,
a student of Gadjah Maha University, Indonesia in which Human Silhouettes represent
togetherness and common goal to care for and understand people with epilepsy. Different
colors represent the fact that people of all ages are affected by Epilepsy and we
must accept it and embrace the diversity. This is a day for everyone regardless of
your location, race, ethnicity and cultural background and also allows a common platform
for people with epilepsy across the globe to share their experiences, struggles and
stories with the world.
The aims of International Epilepsy Day are:
-
To raise awareness of the disease at international and government level as well as
in the general public.
-
To strengthen the epilepsy movement by uniting epilepsy associations.
-
To raise visibility on epilepsy and encourage discussion about epilepsy.
-
To provide epilepsy associations with a significant fund raising opportunity.
Seventy percent of newly diagnosed children and adults with epilepsy can be successfully
treated with anti-epileptic drugs (AEDs). Drugs can be withdrawn in about 70% of children
and 60% of adults without relapses after 2–5 years of successful treatment. Approximately
three-fourths of people with epilepsy in developing countries may not receive the
treatment they need. Moreover in many low- and middle-income countries it's difficult
to access treatment due to low availability and unaffordability of AEDs.[3]
Epilepsy is a cost intensive disorder. Developing countries carry 90% of the financial
burden of epilepsy as 85% of world's 40 million people with epilepsy (PWE) live in
developing countries.[13]
[14]
[15] In a landmark multicentric study to study the cost of epilepsy in India, the total
annual cost per people amounted to INR 13,755 (USD 344). The total economic burden
of epilepsy in India was found to be INR 68.75 billion (1.72 billion USD) which constituted
0.5% GNP of India.[16]
There are dramatic global disparities in the care of epilepsy peoples between high-
and low-income countries and between rural and urban settings. If treated properly,
up to 75% of PWE can lead a normal seizure-free life and 20–30% of PWE have spontaneous
remission of seizures without treatment.[17] The magnitude of epilepsy treatment gap in India ranges from 22% among urban, middle-income
people to 90% in villages[18] which is influenced by lack of access to/knowledge of anti-epileptic drugs, poverty,
cultural beliefs, stigma, poor health delivery infrastructure, shortage of trained
professionals, inequitable distributions of available resources in rural areas and
high cost of treatment.[19]
[20]
[21]
Efforts should be made to reduce the treatment gap in epilepsy. A substantial proportion
of the current large treatment gap in epilepsy in developing countries could be minimized
by educating the primary care physicians about the diagnosis of epileptic seizures,
cost-effective AED treatment, availability of specialist health professionals in low-
and middle-income countries and need-based referral for specialized care.[22]
Epilepsy due to perinatal brain injury remains an important problem in developing
countries and contributes significantly to the burden of epilepsy in developing world.
Predominant causes are perinatal asphyxia, neonatal hypoglycemia, sepsis-meningitis,
late hemorrhagic disease of the newborn and perinatal ischemic arterial stroke, all
of which are preventable.[23]
For many years, IBE, ILAE and WHO have been working on a series of initiatives and
campaigns to increase public awareness about epilepsy and to improve treatment options
for people with epilepsy around the world. In 1997, WHO, ILAE and IBE launched the
Global Campaign against Epilepsy—“Out of the Shadows” and in 2008 WHO launched its
mental health gap action program. This year's central theme for World Brain Day campaign,
which will be celebrated on 22nd July, is Epilepsy. International Epilepsy Day was
celebrated one day prior at ECON 2015 (16th Joint Annual Conference of Indian Epilepsy
Association & Indian Epilepsy Society), Chennai on 8th of February as the last day
of conference coincided with IED.
International Epilepsy Day will definitely improve public awareness and raise visibility
of epilepsy globally which will ultimately lead to improved access to AEDs, provision
of cost-effective treatment, improved funding for research activity in epilepsy and
development of appropriate legislation to protect the rights of all people with epilepsy.
