- Epilepsy is a chronic disorder of the brain that affects people of all ages.
- Approximately 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
- Nearly 80% of the people with epilepsy live in low- and middle-income countries.
- People with epilepsy respond to treatment approximately 70% of the time.
- About three fourths of people with epilepsy living in low- and middle- income countries do not get the treatment they need.
- In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.
Epilepsy is a chronic disorder of the brain that affects people of all ages worldwide. It is one of the world’s oldest recognized conditions.. Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries. This stigma continues in many countries today and can impact on the quality of life for people with the disorder and their families.
Signs and symptoms
Epilepsy is defined as having two or more unprovoked seizures. Seizures are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized), and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
Seizures are a result of excessive electrical discharges in a group of brain cells. This can happen in different parts of the brain. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than one per year to several per day.
Characteristics of seizures vary and depend on where in the brain the disturbance first starts, and how far it spreads. Temporary symptoms occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing and taste), mood, or other cognitive functions.
People with seizures 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 the general population, with the highest rates found in low- and middle-income countries and rural versus urban areas. A great proportion of the causes of death related to epilepsy in low- and middle-income countries are potentially preventable, such as falls, drowning, burns and prolonged seizures.
Rates of disease
Approximately 50 million people currently live with epilepsy worldwide. The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. However, some studies in low- and middle-income countries suggest that the proportion is much higher, between 7 and 14 per 1000 people. Close to 80% of people with epilepsy live in low- and middle-income countries.
Globally, an estimated 2.4 million people are diagnosed with epilepsy each year. In high-income countries, annual new cases are between 30 and 50 per 100 000 people in the general population. In low- and middle-income countries, this figure can be up to two times higher. The higher figure in low- and middle-income countries 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, availability of preventive health programmes and accessible care.
Epilepsy is not contagious. The most common type of epilepsy, which affects 6 out of 10 people with the disorder, is called idiopathic epilepsy and has no identifiable cause.
Epilepsy with a known cause is called secondary epilepsy, or symptomatic epilepsy. The causes of secondary (or symptomatic) epilepsy include:
- brain damage from prenatal or perinatal injuries (e.g. a loss of oxygen or trauma during birth, low birth weight);
- congenital abnormalities or genetic conditions with associated brain malformations;
- a traumatic head injury;
- a stroke that restricts the amount of oxygen to the brain;
- an infection of the brain such as meningitis, encephalitis, neurocysticercosis,
- certain genetic syndromes; or
- a brain tumor.
Epilepsy can be treated easily and affordably with inexpensive daily medication that costs as little as US$ 5 per year. Recent studies in both low- and middle-income countries have shown that up to 70% of children and adults with epilepsy can be successfully treated (i.e. their seizures completely controlled) with anti-epileptic medicines . Furthermore, after 2 to 5 years of successful treatment and being seizure-free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse. It is possible to diagnose and treat most people with epilepsy at the primary health-care level without the use of sophisticated equipment. Surgical therapy might be beneficial to patients who respond poorly to drug treatments.
Despite these facts, about three fourths of people with epilepsy in low- and middle-income countries may not receive the treatment they need. This is called the “treatment gap”. Contributors to the high treatment gap are many and include:
- the lack or severe shortage of appropriately trained staff. According to the WHO 2017 Neurology Atlas, the median number of neurologists in low-income countries is 0.1 per 100 000, compared with 7.1 per 100 000 in high-income countries;
- the low availability of anti-epileptic medicines. A recent study found the average availability of generic antiepileptic medicines in the public sector facilities of low- and middle-income countries to be less than 50%;
- the cost of medication. The above study estimated that epilepsy treatment with the lowest-price generic anti-epileptic medicine cost the lowest-paid worker the equivalent of 2.7 and 5.2 days’ wages in the public and private sectors respectively; and
- the lack of public awareness and cultural beliefs.
Idiopathic epilepsy is not preventable. However, preventive measures can be applied to the known causes of secondary epilepsy.
- Preventing head injury is the most effective way to prevent post-traumatic epilepsy.
- Adequate perinatal care can reduce new cases of epilepsy caused by birth injury.
- The use of drugs and other methods to lower the body temperature of a feverish child can reduce the chance of febrile seizures.
- Central nervous system infections are common causes of epilepsy in tropical areas. Elimination of parasites and education on how to avoid infections can be effective ways to reduce epilepsy in these environments.
Social and economic impacts
Epilepsy accounts for 0.6%, of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in less than full health. Epilepsy has significant economic implications in terms of health care needs, premature death and lost work productivity.
An Indian study conducted in 1998 calculated that the cost per patient of epilepsy treatment was as high as 88.2% of the country’s per capita Gross National Product (GNP), and epilepsy-related costs, which included medical costs, travel, and lost work time, exceeded $2.6 billion/year (2013 USD).(1)
The discrimination and social stigma that surround epilepsy in some parts of the world are often more difficult to overcome than the seizures themselves. People living with epilepsy can be targets of prejudice. The stigma of the disorder can discourage people from seeking treatment for symptoms, so as to avoid becoming identified with the disorder.
People with epilepsy can experience reduced access to health and life insurance, withholding of the opportunity to obtain a driving license, and barriers to enter certain occupations. In many countries legislation reflects centuries of misunderstanding about epilepsy. For example:
- In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages.
- In the United Kingdom, laws which permitted the annulment of a marriage on the grounds of epilepsy were not amended until 1971.
- In the United States of America, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
Legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to health-care services, and raise the quality of life for people with epilepsy.
WHO and its partners recognize that epilepsy is a major public health concern. As part of an initiative established in 1997, WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) are carrying out a global campaign – “Out of the Shadows” – to provide better information and raise awareness about epilepsy and strengthen public and private efforts to improve care and reduce the disorder's impact.
This, as well as other WHO projects on epilepsy, have shown that there are simple, cost-effective ways to treat epilepsy in resource-poor settings, thereby significantly reducing treatment gaps. For example, a project carried out in China resulted in treatment gap reductions of 13% over 1 year and significant improvements in access to care for people with epilepsy.
Projects which aim to reduce the treatment gap and morbidity of people with epilepsy, to train and educate health professionals, to dispel stigma, to identify potential prevention strategies, and to develop models integrating epilepsy control into local health systems are ongoing in many countries.
In particular, the WHO Programme on Reducing the Epilepsy Treatment Gap and the Mental Health Gap Action Programme (mhGAP) sought to achieve these goals in Ghana, Mozambique, Myanmar and Viet Nam. These projects combined several innovative strategies. They focused on expanding the skills of primary care and non-specialist health professionals at the community level to diagnose, treat and follow up people with epilepsy. The Programme also included strengthening of health systems to increase sustainable access to antiepileptic medicines, reinforcing referral systems and ensuring better monitoring of epilepsy in health information systems. It included activities to raise awareness about epilepsy and to support people with epilepsy and their families.
Recognising the need to improve access to epilepsy care and reduce stigmatism, the World Health Assembly in 2015 adopted a resolution, WHA68.20: Global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications. This resolution urges governments to formulate, strengthen and implement national policies and legislation to promote access to care and protect the rights of people living with epilepsy. It emphasizes the importance of training non-specialist health care providers in order to reduce epilepsy treatment gaps.
(1) Megiddo I, Colson A, Chisholm D, Dua T, Nandi A, and Laxminarayan R (2016). Health and economic benefits of public financing of epilepsy treatment in India: An agent-based simulation model. Epilepsia Official Journal of the International League Against Epilepsy doi: 10.1111/epi.13294.