Ignorance about epilepsy should not be acceptable in this day and age. It is 2010, but take a look at some of the myths that exist about epilepsy.
Myth: Epileptic seizure comes as a result of the body being possessed by and evil spirit and it is a curse of god. Reaction to myth: The “evil spirit” must be addressed via “black magic” or the individuals that have epilepsy become outcasts in society. In parts of Kutch, India villagers have adopted a discriminating practice of branding the patient by forcing a permanent mark on his/her forehead.
Myth: If a woman has epilepsy her child will have epilepsy. Reaction to the myth: women with epilepsy should not marry and should not have children. In some cultures the women were sterilized.
Myth: If a person is having a seizure you should put something hard in their mouth to prevent them from swallowing their tongue. Reaction to the myth: In some culture they place onions, footwear etc. in the mouth of the individual having a seizure.
In certain parts of Nigeria methods which are used to resuscitate a person who is experiencing an epileptic fit include forcing the unconscious person to drink a mixture made of cow urine (which can lead to further complications), thrusting their limbs into a fire, and rubbing pepper into their eyes and face.
Malayalam films have given rise to many characters with epilepsy in lead roles. Most of these films show the person having a seizure being calmed down by a metal key-chain thrust strongly into the person’s palm.
In Cameroon the Bamileke of Maham believe that epilepsy is contagious. Treatment generally consists of a healer and undergoing dietary restrictions to help prevent the production of foam in the stomach. They believe that excess foam in the stomach rises to the head ultimately resulting in seizures.
In Malawi it is also thought that seizures are the result of an abnormality in the stomach that consists of moving insects which have somehow ended up there. To cure epilepsy, a traditional healer will mix herbs and roots and upon ingestion the person will vomit out the insects.
In Swaziland and Ethiopia the therapies are based on the idea of purification and include enemas, vomiting, inhaling medicinal substances, and even exorcism.
Ayurvedic medicine has long been a popular treatment method for different illnesses in India. This type of treatment focuses on opening the heart and the mind and relieving the stresses and negative energies which are causing the seizures. This is done with enemas and purgatives, as well as ingesting purified butters (ghees) and oils cooked with drugs. Certain methods involve drugs being applied through the eyes and nose. More conventional remedies include massages and baths. Less typical remedies include cauterization of the parietal bones with needles and blood-letting or venesection (Siravedha).
Chinese folk medicine is a fairly common practice, also known as Dan Fang. Some of the remedies which it suggests are drinking a young girl’s urine, and eating fresh human brain or goat’s heart. Chinese folk medicine also recommends other forms of healing, such as herbal remedies and therapies in which needles are inserted into the skin.
In Nepal, epilepsy is associated with weakness, possession by an evil spirit or the reflection of a red colour. Bystanders who witness a seizure will often spray water on the forehead of the person experiencing the seizure of make him or her smell a leather shoe.
In 1976 in Germany, Anneliese Michel, a 23-year-old student had temporal lob epilepsy died from starvation when she stopped eating during a period of several exorcisms conducted by two priests who believed she was possessed by devils.
In the Netherlands in 1996, a person was whipped and put into isolation because her seizures were thought to result from magic.
The Hmong of Laos believe that seizures are evidence that the person has power to perceive things that other people cannot see and can conduct trances.
Other remedies for epilepsy tied to myths
Here are some other remedies used around the world to “cure” epilepsy:
Take nine pieces of young elder twig; run a thread of silk of three strands through the pieces, each piece being an inch long. Tie this round the patient’s neck next the skin. Should the thread break and the amulet fall, it must be buried deep in the earth and another amulet made like the first, for if once it touches the ground the charm is lost.
Take nine pieces of a dead man’s skull, grind them to powder, and then mix with a decoction of wall rue. Give the patient a spoonful of this mixture every morning fasting, till the whole potion is swallowed. None must be left, or the dead man would come to look for the pieces of his skull.
The dried body of a frog worn in a silk bag around the neck averted epilepsy and other fits.
As reflected in the story of the boy with epilepsy in the synoptic gospels which was to be expelled by Christ and later by his representatives, the priests who conducted an exorcism.
Laws affecting people with epilepsy
In many countries legislation affecting people with epilepsy has reflected centuries of suspicion and misunderstanding about epilepsy. For example, people with epilepsy are often prevented from marrying or having children. Here are some laws that victimized people with epilepsy:
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 of America (USA), many individual States prohibited people with epilepsy from marrying. The last State to repeal this law did so in 1980.
In the In the United States of America (USA), 18 States provided eugenic sterilisation of people with epilepsy until 1956. Until the 1970s, it was also legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
As you can see we have a long way to go in regard to raising awareness about epilepsy worldwide. Some of this information was shocking to me. Some of the treatment methods are horrific. It is also shocking that some of these activities are not exclusive to “undeveloped countries.” It is shocking that as late as 1980 there was a state in the United States with a law prohibiting people with epilepsy to marry.
This is one of the biggest reasons the epilepsy awareness campaigns are so important. If we can’t eliminate these myths or the stigma surrounding epilepsy, how can we get to the next step which is to get people involved with assisting or funding research for the cure.
I encourage everyone to take the time to learn about epilepsy and join the campaign to raise awareness.
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By Anna Press