- Epilepsy is a chronic noncommunicable disorder of the brain that affects people of all ages.
- Around 50 million people worldwide have epilepsy.
- Nearly 80% of the people with epilepsy are found in developing regions.
- Epilepsy responds to treatment about 70% of the time, yet about three fourths of affected people in developing countries do not get the treatment they need.
- People with epilepsy and their families can suffer from stigma and discrimination in many parts of the world.
Epilepsy is a chronic disorder of the brain that affects people in every country of the world. It is characterized by recurrent seizures. Seizures are brief episodes of involuntary shaking which may involve a part of the body (partial) or the entire body (generalized) and sometimes accompanied by loss of consciousness and control of bowel or bladder function. The episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges. 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.
One seizure does not signal epilepsy (up to 10% of people worldwide have one seizure during their lifetimes). Epilepsy is defined by two or more unprovoked seizures. Epilepsy is one of the world's oldest recognized conditions. Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries. Some of the stigma continues today in many countries and can impact the quality of life for people with the disorder and their families.
Signs and symptoms
Characteristics of seizures vary and depend on where in the brain the disturbance first starts, and how far it spreads. Temporary symptoms can occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing and taste), mood or mental function.
People with seizures tend to have more physical problems (such as fractures and bruising), as well as higher rates of other diseases or psychosocial issues and conditions like anxiety and depression.
Rates of disease
The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or the need for treatment) at a given time is between 4 to 10 per 1000 people. However, some studies in developing countries suggest that the proportion is between 6 to 10 per 1000. Around 50 million people in the world have epilepsy.
In developed countries, annual new cases are between 40 to 70 per 100 000 people in the general population. In developing countries, this figure is often close to twice as high due to the higher risk of experiencing conditions that can lead to permanent brain damage. Close to 80% of epilepsy cases worldwide are found in developing regions. The risk of premature death in people with epilepsy is two to three times higher than it is for the general population.
The most common type – for six out of ten people with the disorder – is called idiopathic epilepsy and has no identifiable cause. In many cases, there is an underlying genetic basis.
Epilepsy with a known cause is called secondary epilepsy, or symptomatic epilepsy. The causes of secondary (or symptomatic) epilepsy could be:
- brain damage from prenatal or perinatal injuries (a loss of oxygen or trauma during birth, low birth weight);
- congenital abnormalities or genetic conditions with associated brain malformations;
- a severe blow to the head;
- a stroke that starves the brain of oxygen;
- an infection of the brain such as meningitis, encephalitis, neurocysticercosis;
- certain genetic syndromes;
- a brain tumor.
Recent studies in both developed and developing countries have shown that up to 70% of newly diagnosed children and adults with epilepsy can be successfully treated (i.e. their seizures completely controlled) with anti-epileptic drugs (AEDs). After two to five years of successful treatment, drugs can be withdrawn in about 70% of children and 60% of adults without relapses.
- In developing countries, three fourths of people with epilepsy may not receive the treatment they need.
- About 9 out of 10 people with epilepsy in Africa go untreated.
- In many low- and middle-income countries, there is low availability and AEDs are not affordable and this may act as a barrier to accessing treatment. A recent study found the average availability of generic antiepileptic medicines in the public sector to be less than 50%.
- Surgical therapy might be beneficial to patients who respond poorly to drug treatments.
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 subsequent convulsions.
- Central nervous system infections are common causes of epilepsy in tropical areas, where many developing countries are concentrated. Elimination of parasites in these environments and education on how to avoid infections would be effective ways to reduce epilepsy worldwide, for example due to neurocysticercosis.
Social and economic impacts
Epilepsy accounts for 0.5% of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in states of less than full health. Epilepsy has significant economic implications in terms of health-care needs, premature death and lost work productivity. An Indian study calculated that the total cost per epilepsy case was US$ 344 per year (or 88% of the average income per capita). The total cost for an estimated five million cases in India was equivalent to 0.5% of gross national product.
Although the social effects vary from country to country, the discrimination and social stigma that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves. People with epilepsy can be targets of prejudice. The stigma of the disorder can discourage people from seeking treatment for symptoms and becoming identified with the disorder.
People with epilepsy experience reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, and barriers to enter particular occupations, among other limitations. 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, a law forbidding people with epilepsy to marry was repealed only in 1970.
- In the United States, 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 quality of life.
WHO and its partners recognize that epilepsy is a major public health concern. 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.
Projects to reduce the treatment gap and morbidity of people with epilepsy, train and educate health professionals, dispel stigma, identify potential for prevention and develop models integrating epilepsy control into local health systems are ongoing in many countries. In a project carried out in China, the treatment gap was reduced by 13% and there was improved access to care for people with epilepsy.