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Epilepsy Myths and Facts

Important Facts You Should
Know About Epilepsy
  • Epilepsy is a neurological disorder not a disease, characterized by recurrent and unprovoked seizures and temporary impairment of brain function. There currently is no known cure.

  • Epilepsy is the 3rd most common neurological condition after stroke and Alzheimer’s.

  • Worldwide, 39 million people are believed to have epilepsy, however 30 million of them - nearly 3 out of every 4 - get almost no help for the condition.

  • Epilepsy represents the most common problem of nervous system affecting children.

  • Epilepsy occur at all ages; tend to start in infancy or late adolescence but the incidence rises again after 65.

  • The rate of epilepsy is usually higher in males than in females.

  • Children age 18 or younger make up the bulk of people with epilepsy while the seniors form the second largest age group.

  • Head injuries, strokes, brain tumors, infections and genetic conditions are potential causes of approximately 35 percent of all cases of epilepsy. In the remaining 65 percent, no cause can be found.

  • Risk of recurrence after the first, unprovoked single seizure varies from 30-70%.

  • People with epilepsy of no known cause and onset in early to middle childhood (except neonatal seizures) sometimes respond better to medication.

  • Studies show that a third of people with epilepsy worldwide experiences prejudice/discrimination in the workplace.


Age of Onset
    Epilepsy primarily affects children and young adults, although anyone can get epilepsy at anytime. 20 percent of cases develop before the age of five. 50 percent develop before the age of 25. It is also increasingly associated with the elderly, and there are as many cases of epilepsy in those 60 years of age and older as in children 10 years of age and under. 1 in every 10 persons will experience a seizure at some point in their lives.


Causes
    In about 70 percent of cases there is no known cause. Of the remaining 30 percent, the following are most frequent:

  • Head trauma - especially from automobile accidents, gunshot wounds, sports accidents, falls and blows at work or in the home. The more severe the injury, the greater the risk of developing epilepsy.

  • Brain tumor or stroke.

  • Poisoning - such as lead poisoning. More than 5,000 persons each year are reported to suffer seizures caused by alcoholism.

  • Infection - meningitis, viral encephalitis, lupus erythematosus and, less frequently, mumps, measles, diphtheria, and others.

  • Maternal injury - infection or systemic illness affecting the developing brain of the fetus during pregnancy.


Treatment
    Modern treatment methods can achieve full or partial control of seizures in about 85 percent of cases. Some seizure disorders of infancy and early childhood are still highly resistance to current therapies:

  • Medical - major form of treatment is long-term anticonvulsant drug therapy. More than 20 antiepileptic drugs are currently in use. While multiple-drug therapy is sometimes necessary, single-drug therapy is more common.

  • Surgical - used only when medication fails. Most common form takes place when the brain tissue causing seizures is confined to a small focal area of the brain which can be safely removed without damaging personality or function.

  • Dietary - a special high fat, high calorie diet may succeed in some childhood cases when standard treatment fails.


Common Myths About Epilepsy
    A great deal has been learned about epilepsy in the past century, but many misperceptions still exist, including what epilepsy is and what to do during a seizure. Whenever you tell someone about epilepsy you will probably have to explain what it is and is not and what to do during a seizure. Here are some common myths to look out for:

  • Epilepsy is contagious - you can catch it.

    Epilepsy is not a disease or illness. It is a condition in which there is recurrent seizures (or fits or convulsion- they means the same thing). Seizure is a temporary state of abnormal electrical activity within the brain that occur only occasionally.

  • People with epilepsy are mentally ill or retarded.

    Although epilepsy is related to the brain, it does not indicate that a person is mentally ill or mentally retarded. Epilepsy is a physical condition and is not related to mental illness or intelligence.

  • During a seizure, people will swallow their tongue and suffocate.

    It is physically impossible to swallow your tongue, yet many people will try to help a person having a seizure by forcing their mouth open and trying to hold their tongue. This is potentially dangerous both to the person helping (they may get bitten) and the person having the seizure (they may have their teeth damaged). However, a person should be rolled on their side during a convulsive seizure (like clonic-tonic seizures) to ensure that their airway is not blocked.

  • All seizures involve convulsions in which the victim becomes rigid and shakes.

    There are many different types of seizures involving different parts of the brain. Depending on which part of the brain is involved, there will be different physical symptoms. For example, a seizure victim may experience sudden loss of muscle definition, blank stares, rapid blinking, intense emotional and/or physical sensations (e.g. fear, joy, unpleasant sights or smells).

  • An ambulance should be called when someone has a seizure.

    Most seizures do not require any medical attention and calling an ambulance is an unnecessary waste of money. However, there are four reasons to call an ambulance:
  1. This is the first time the person has had a seizure.
  2. The seizure lasts more than 5 minutes.
  3. There are multiple seizures in a row.
  4. The person is injured or asks for an ambulance.
  • You can stop a seizure by holding someone down.

    You can't physically stop a seizure, and restraining someone might lead to injury. During a seizure, ease the person to the floor or away from sharp or hard objects, and loosen the shirt collar if necessary.

  • Only children get epilepsy.

    Epilepsy can strike anyone. It's most common in children, but those 65 or older are also more likely to develop the disorder than younger adults. Cerebrovascular disorders like aneurysms and stroke are common causes of epilepsy in the elderly.

  • All seizures are caused by epilepsy.

    Other medical conditions that can cause seizures include diabetes, brain infections, heat exhaustion, pregnancy, poisoning, hypoglycemia, high fever and head injury. Seizures caused by these medical conditions necessitate immediate medical attention.

  • Epilepsy isn't very serious because you can't die from it.

    People with epilepsy are more likely to die from drowning, accidents or sudden, unexplained death than the general population. For instance, 58 Americans with epilepsy drowned between 1992 and 1997. Also patients who go into status epilepticus must be treated immediately as it can lead to serious brain damage or loss of life.

  • There must be a cure for epilepsy because you don't see that many people with seizures.

    There is no cure for epilepsy. Globally, more than 40 million people have the disorder, including 2.3 million Americans. Advances in medicine, primarily medications, now enable 56 percent of Americans with epilepsy to live seizure-free lives. But those with uncontrolled seizures face daunting challenges, including higher rates of suicide, unemployment and strained family relationships.

  • People with epilepsy are disabled and can't work.

    People with the condition have the same range of abilities and intelligence as the rest of us. Some have severe seizures and cannot work; others are successful and productive in challenging careers.

  • People with epilepsy shouldn't be in jobs of responsibility and stress.

    People with seizure disorders are found in all walks of life and at all levels in business, government, the arts and the professions. We aren't always aware of them because many people, even today, do not talk about having epilepsy for fear of what others might think.

  • With today's medication, epilepsy is largely a solved problem.

    Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's a critical need for more research.

  • You can't tell what a person might do during a seizure.

    Seizures commonly take a characteristic form and the individual will do much the same thing during each episode. His behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

  • People with epilepsy are physically limited in what they can do.

    In most cases, epilepsy isn't a barrier to physical achievement, although some individuals are more severely affected and may be limited in what they can do. Professional sports players with epilepsy have included Greg Walker (Chicago White Sox - baseball), Bobby Jones (Denver Nuggets & Philadelphia '76ers - basketball), and Gary Howatt (New York Islanders -hockey).


Historical Overview
    The oldest detailed account of epilepsy is on a Babylonian tablet in the British Museum. This is a chapter from a Babylonian textbook of medicine comprising 40 tablets dating as far back as at least 2000 BC.

    The tablet accurately records many of the different seizure types we recognize today. It emphasizes the supernatural nature of epilepsy, with each seizure type associated with the name of a spirit or god - usually evil. Treatment was, therefore, largely a spiritual matter.

    The Babylonian view was the forerunner of the Greek concept (5th century BC) of "The Sacred Disease", as described in the famous treatise of that title by Hippocrates. However, Hippocrates believed that epilepsy was not sacred, but a disorder of the brain-- a revolutionary view. He did not believe "that a human could be invaded by a god, the basest by the most pure." He recommended physical treatments and stated that if the disease became chronic, it was incurable.

    The word epilepsy is derived from the Greek "epilepsia" which means "to take hold of" or "to seize."

    Hippocrates' view of epilepsy as a brain disorder did not begin to take root until the 18th - 19th centuries. The intervening 2000 years had been dominated by the earlier supernatural views. This was reinforced, for example, in the account of Christ casting out a devil from a young man with epilepsy (Mark, 9:14-29; also in Matthew and Luke).

    Throughout this time people with epilepsy were viewed with fear, suspicion and misunderstanding, and were subjected to enormous social stigma. They were treated as outcasts and punished. However, some of them succeeded and, in fact, became famous the world over. Among them were Julius Caesar, Czar Peter the Great of Russia, Pope Pius IX, the writer Fedor Dostoevsky, the poet Lord Byron and others.

    Even today, people with epilepsy continue to suffer discrimination in the family, marriage, employment, law, education and society.

    In Europe, since medieval times St. Valentine has been the patron saint of people with epilepsy. Sites of pilgrimages included Rome and Terni (where he was Bishop) in Italy, Ruffach in France (where a hospital for epilepsy was built), Poppel in Belgium, and Passau in Germany.

    In the 19th century, as neurology emerged as a new discipline, distinct from psychiatry, the concept of epilepsy as a brain disorder became more widely accepted, especially in Europe and North America. This helped to reduce the stigma associated with the disorder. Bromide, introduced in 1857 by Sir Charles Locock, as the world's first effective antiepileptic drug, became widely used in Europe and North America during the second half of the last century.

    A hospital for the "paralyzed and epileptic" was established in London in 1857. At the same time a more humanitarian approach to the social problems of epilepsy resulted in the establishment of epilepsy "colonies" for care and employment. Examples include Bielefeld-Bethel in Germany, Heemstede in Holland, Chalfont in England, Zurich in Switzerland, Dianalund in Denmark, and Sandvikain in Norway.

    The foundation of our modern understanding of the derangement of function seen in epilepsy (pathophysiology) was also laid in the 19th century with the proposal by Hughlings Jackson (1873), a London neurologist, that seizures were the result of sudden brief electro-chemical discharges of energy in the brain - the character of the seizures depending on the location and function of the seat of the discharges.

    Soon afterwards the electrical excitability of the cortex of the brain in animals and man was discovered by David Ferrier in London and Gustav Theodor Fritsch and Eduard Hitzig in Germany.

    Working in Germany during the 1920s, Hans Berger, a psychiatrist, developed the human electroencephalograph (EEG "brainwaves"). Its important application from the 1930s onwards was in the field of epilepsy. The EEG revealed the presence of the electrical discharges in the brain. It also showed different patterns of brainwave discharges associated with different seizure types.

    The EEG helped to locate the site of seizure discharges and expanded the possibilities of neurosurgical treatments, which became much more widely available from the 1950s onwards in London, Montreal and Paris.

    During the first half of this century the main drugs for the treatment of epilepsy were phenobarbitone (1912) and phenytoin (1938). Since the 1960s there has been an accelerating process of drug discovery, based in part on a much greater understanding of the electrochemical activities of the brain, especially the excitatory and inhibitory neurotransmitters.

    In developed countries in recent years, several new drugs have come on to the market. Seizures can now be controlled in approximately three-quarters of newly-diagnosed children and adults.

    Another recent stimulus towards the understanding and treatment of epilepsy in the last few decades has been the developments in structural and functional neuroimaging, especially computer tomography (CT) scanning, magnetic resonance imaging (MRI) and MRI spectroscopy and positron emission tomography. Such techniques have revealed many of the more subtle brain lesions responsible for epilepsy. Any type of brain lesion (e.g. trauma, congenital, developmental, infection, vascular, tumour, degenerative) can lead to epilepsy in some patients.

    During the last few decades greater attention has been paid to the psychological and social needs and quality of life issues of people with epilepsy, although progress is slow and services are still poor.

    Most of the advances in developed economies are of little or no relevance to the 80% of people with epilepsy who live in developing countries. For most of these people the older supernatural views, social stigma and discrimination still prevail. Even in the developed world, the disorder is still shrouded in secrecy, and people prefer not to reveal or discuss their illness.

    Of the estimated 40 million people in the world with epilepsy, 32 million have no access to treatment at all - either because services are non existent or, just as importantly, because epilepsy is not viewed as a medical problem or a treatable brain disorder.

    The International League Against Epilepsy, a world-wide professional organisation, was founded in 1909 and is growing rapidly, with chapters in 60 countries.

    The International Bureau for Epilepsy, the equivalent lay organisation, was founded in 1962 and is also rapidly expanding, with 50 national chapters.

    In 1997, these two organisations joined forces with the World Health Organisation in the Global Anti-Epilepsy Campaign aimed at improving prevention, treatment, care and services for those with epilepsy and raising public awareness of the disorder and its acceptability.



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