Global Campaign against Epilepsy:
Out of the Shadows
Mission Statement
To improve acceptability, treatment, services
and prevention of epilepsy worldwide.
Established in 1997 as a joint project of the:
The campaign at a glance [pdf 252kb]
- World Health Organization (WHO)
- International League Against Epilepsy (ILAE)
- International Bureau for Epilepsy (IBE)
Objectives :
- Increase public and professional awareness of epilepsy as a universal, treatable brain disorders;
- Raise epilepsy to a new plane of acceptability in the public domain;
- Promote public and professional education about epilepsy;
- Identify the needs of people with epilepsy on a national and regional basis;
- Encourage governments and departments of health to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services, and prevention.
Campaign strategy:
Working along two parallel tracks, the Campaign will :
- Raise general awareness and understanding of epilepsy;
- Support Departments of Health in identifying needs and promoting education, training, treatment, services, research and prevention in their countries.
Campaign tactics :
- To generate Regional Declarations on Epilepsy, produce information on epilepsy for policy-makers, incorporate epilepsy care into National Health Plans, and facilitate the establishment of national organizations of professionals and lay persons who are dedicated to promoting the well-being of people with epilepsy;
- To help organize Demonstration Projects that illustrate good practice in the provision of epilepsy care.
Campaign activities :
:: REGIONAL DECLARATIONS :
:: REGIONAL REPORTS :
:: DEMONSTRATION PROJECTS :
:: ANNUAL REPORTS AND OTHER PUBLICATIONS :
Atlas: Epilepsy care in the world 2005
Atlas: Epilepsy care in the world 2005 [pdf 8.18Mb]
To facilitate retrieval, the Atlas has been divided into individual chapters here below:
Epilepsy atlas - Front pages [pdf 511kb]
Acknowledgements, preface, executive summary, introduction, methodology
Epilepsy: the disorder [pdf 1.01Mb]
Milestones in the history of epilepsy, number of people with epilepsy, epidemiology, aetiology of epilepsy - reported frequency, aetiology and risk factors
Epilepsy: the services - part 1 [pdf 1.32Mb]
Diagnostic services, primary care, provision of care, inpatient care, epilepsy specialist services
Epilepsy: the services - part 2 [pdf 774kb]
Antiepileptic drugs, the treatment gap, sub-specialized services, epilepsy surgery
Epilepsy: the care providers - part 1 [pdf 1.08Mb]
Medical professionals, professionals allied to medicine, training in epileptology, education in epileptology
Epilepsy: the care providers - part 2 [pdf 1.57Mb]
Professional organizations, lay associations, role of ILAE in fostering epilepsy care, role of IBE in providing epilepsy care
Epilepsy: the public health aspects - part 1 [pdf 828kb]
Budget and financing, disability benefits, epilepsy and rights, reporting and data collection
Epilepsy: the public health aspects - part 2 [pdf 632kb]
Problems encountered, stigma and social issues, the attributable and advertable burden of epilepsy, Global Campaign Against Epilepsy
Glossary, references, respondents [pdf 385kb]
Developing approaches to reducing stigma of epilepsy:
:: The CREST Study [pdf 275kb]
:: CREST News Update [pdf 100kb]
Bringing support to epileptic patients
Mumbai: Alpana Palan, a 40-year-old who suffered from epilepsy since she was six months old, found her first 'real' friend at 'Samman', an epileptic support group in the city. "I used to never go out alone and was quite nervous talking to anybody. Before meeting people here, I used to never tell anyone that I had epilepsy," she said. Epilepsy is a disorder of the central nervous system characterised by loss of consciousness and convulsions. A person with epilepsy suffers recurrent seizures. A seizure is defined as an abnormal, disorderly discharging of the neurons or brain cells, resulting in a temporary disturbance of motor, sensory, or mental functions.
As for any disease that looks 'not-so-normal' in public eyes, this one also has a lot of stigma attached to it. But with support groups like Samman, many patients have realised that there are a lot of people out there looking for support. And the best way to support is to support each other.
"This group helped me come out of my shell and become a confident person. I even worked here later on as a counsellor for other patients," said Palan. She also found her husband, Manish, here. He was also part of the group.
Samman started on November 17 in 1991 -- on a World Epilepsy Day. Several patients and doctors had teamed up for two months to prepare for the performances on that day. The bond that developed between them during the preparation made them realise the importance of interacting with people who suffer similar problems. Dr Praveena Shah, consultant neurologist, Wockhardt Hospital, is one of the founder members of the group. She believes that such a group is extremely essential, as the patients need psychological help along with medical help.
"Epilepsy is a chronic disorder and most of the patients are afraid to tell anyone about it," she said. For over two-and-a-half years, the members of the support group used to meet at Dr Shah's house once a month, where they used to have discussions and share their experiences. Now meetings are held fortnightly at a school in Nanachowk, where patients and their families interact with psychologists and counsellors.
"The help and support one can get from sharing each other's experiences is far more important than the medical help," said Manisha Alate, who has been associated with the group for over 12 years.
Samman epilepsy support group: 022-65057751/ 022-2385 0563
Epilepsy Films :
Two Sisters
A feature film on Epilepsy penned & directed by Dr.Debashish Chowdhury, G.B.Pant Hospital, New Delhi.
Mirgi ki unkahi kahani
Presented by Epilepsy Partnership India
Care for People with Epilepsy
Meet Epilepsy by Taiwan Epilepsy Association
Epilepsy Books
Epilepsy In India
By B.S. Singhal and Devika Nag
'Take Me Out For Dinner Tonight'
By Dr.Ajay Sodani
'Mirgi- Kuchh Kahaniya' & 'Mirgi ka Such'
By Dr.Shailendra Jain
Conquering Epilepsy
By Carol D'Souza
Magazines / Newsletters
Epilepsy India
Indian Epilepsy Association & Indian Epilepsy Society releases quarterly Newsletter. Available Online at
www.epilepsyindia.org