Epilepsy A Global Condition

• 250.000.000 people will experience one seizure in a life time.
• 50.000.000 people in the world have active epilepsy.
• 42.500.000 people with epilepsy live in developing countries.
• 2.500.000 new cases of epilepsy are diagnosed each year.
• 80% of Anti Epileptic Drugs (AEDs) are sold in 20% of the world’s countries.
• 70% of people with epilepsy can be seizure free with treatment.
• 80% of people with epilepsy are not properly diagnosed or treated.

The Treatment Gap
Quite simply, the vast majority of people with epilepsy in the world do not receive adequate medical care and treatment for their condition. The difference between what they do receive and what they need is called “the treatment gap”.

The Global Campaign Against Epilepsy was established by the International Bureau for Epilepsy (IBE), the International League Against Epilepsy (ILAE) and the World Health Organization (WHO) in 1997. The Campaign’s mission is to bring epilepsy “out of the shadows” by improving the acceptability, treatment, services and prevention of epilepsy worldwide.

Whilst the treatment gap is connected with national and international income inequalities and poverty, the gap is also the result of a number of other factors and constraints. These include: different perceptions about epilepsy which influence people’s health seeking strategies; lack of prioritisation in health budgets; lack of training for health professionals; lack of infrastructure; limited choice and/or supply of AEDs and the social stigma against epilepsy resulting in prejudice and discrimination.

The Burden of Epilepsy
People with epilepsy are often viewed by others with suspicion and misunderstanding leaving them stigmatised and shunned by their communities as well as disadvantaged in terms of education and employment. People are, therefore, burdened socially and economically as well as in terms of their health.

The use of Disability Adjusted Life Years (DALYs) has revealed that epilepsy may contribute around 1% of the global total of days lost due to ill-health. Epileptic seizures may also lead to injuries being sustained. In parts of Africa, for example, epilepsy is known as the burns disease because people experiencing a seizure often fall into their open fire used for cooking.

Epilepsy will also often have a psychological or an emotional impact. Uncontrolled seizures can be very unsettling. People can fear going outside their homes unaccompanied. They may also fear what people might think of them if they are seen having a seizure. Across the world and throughout history, epilepsy has been a culturally devalued condition. This often leads to people with epilepsy being stigmatised and causes a psychosocial burden on those affected.

Campaign objectives
In seeking to reduce the treatment gap and the burden of epilepsy, IBE, ILAE and WHO have set the following objectives for the Global Campaign: –

1. To increase public and professional awareness of epilepsy as a universal treatable disorder.
2. To raise epilepsy to a new plane of acceptability in the public domain.
3. To promote public and professional education about epilepsy.
4. To identify the needs of people with epilepsy on a national and regional basis.
5. To encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services and prevention.

Campaign structure
The Global Campaign is a joint initiative of the International Bureau for Epilepsy (IBE), the International League Against Epilepsy (ILAE) and the World Health Organization (WHO). All three organisations are equal partners in the Global Campaign.

The International Executive Committee of IBE, and its counterparts in ILAE and WHO, is responsible for deciding the Global Campaign’s overall strategy and for ensuring the strategy is delivered.

The people responsible for implementing the strategy during the period 2005-2009 are the two Global Campaign Co-Chairs; Philip Lee representing IBE and Professor Giuliano Avanzini representing ILAE, together with counterparts from the WHO.

Both IBE and ILAE ensure that the Global Campaign complements the rest of their activities by linking it into regional representative structures (regional committees and regional commissions) and by establishing links with other commissions.