A new symbol for epilepsy in Chinese

The Chinese character for epilepsy has been changed to avoid the inaccuracies and stigma associated with the previous label which suggested links to madness and, more unusually, animals.

The new name, which looks like this just makes reference to the brain although the story of how the original name got its meaning is quite fascinating in itself.

The following text is from an article in the medical journal Epilepsia which announced the change:

If you’re wondering where the bit about the ‘bizarre movements of goats’ came I suspect it’s from a type of fainting goat that looks like it has seizures and falls over. You can see them ‘in action’ in this YouTube video.

However, the link is mistaken as the goats do not have seizures. The effect is caused by their muscles locking up, independently of their brain, by a condition called myotonia congenita.

Link to ‘Announcement of a new Chinese name for epilepsy’ (via @cmaer)

View the original article here

Of both lovers and epilepsy

Saint Valentine is the patron saint of both lovers and epilepsy – sadly, a little known fact.

There is one wonderful example of this divine coupling, however, where the passionate saint appears alongside EEG traces on 1998 postage stamp from Italy.

This description is from a brief 2003 article from the Journal of Neurology, Neurosurgery & Psychiatry on the stamp.

EEG has been illustrated on a number of stamps. An Italian stamp of 1988 shows a pictorial representation of an EEG and St Valentine (Stanley Gibbons no. 1989, Scott no. 1743). St Valentine was the first bishop of Temi in Umbria. Some of the mythology is not entirely clear, but St Valentine was probably a physician who was martyred by the Romans on February 14, 273. He is patron saint of both lovers and epilepsy. There are also other patron saints of epilepsy.

Legend has it that St Valentine miraculously cured a young fiancee, Serapia, afflicted with a mysterious illness, thought now to be epilepsy. Sites where St Valentine was thought to have lived or visited became pilgrimage destinations for cure of the disorder. These destinations included Rome and Temi in Italy, Ruffach in France (where a hospital for epilepsy was later built), Poppel in Belgium, and Passau in Germany. Soon after Valentine’s death young lovers started making pilgrimages to Temi to be blessed by the Bishop on the 14th hour of every month for eternal love.

It’s worth noting that this recounts the traditional story of Saint Valentine although the actual history seems a little fuzzy and there were likely many historical people who have been blended into the image of the love-promoting holy man.

However, this also makes Valentine’s Day the day of both love and epilepsy, or as I like to think of it, lovers with epilepsy.

Link to JNNP article on epilepsy and Valentine stamp.

View the original article here

Epilepsy as a door between worlds

There’s a wonderful anthropology study on beliefs about epilepsy among the Guaraní people in Bolivia in the latest Epilepsy and Behavior.

The Guaraní believe that people with recurrent seizures are a gateway between the worlds of life and death.

Among the Guaraní, epilepsy is called mano-mano, which literally means “die-die” and refers to the concept of death with a notion of frequency (die several times) and also of being in a constant passage between life and death. In other terms, this word means always being on the border between life and death, reflecting the fact that mano-mano produces a constant interruption of life or a “partial death.”…

In fact, the expression mano-mano is meaningful. It refers to the idea of a round trip between life and death. This concept addresses the loss of consciousness and shows that epilepsy is recognized mostly in terms of generalized seizures. The uncertain state between life and death is seen as a kind of “third possible condition” for a human being, a state that generates hesitation over what attitude to hold. PWE [people with epilepsy] are omano-mano-vae, the “undeads,” different from the other members of the community and considered both as victims of this life–death relationship and as enablers of the meeting of these two worlds…

The representation of epilepsy as a state of human being and the perception of this in a vision that involves the entire community allow an interpretation of Guaraní attitudes toward PWE [people with epilepsy]. Guaraní PWE are rarely condemned, misjudged, or isolated as in other cultures. Apparently, PWE do not represent a threat to the Guaraní, who seem to hold the attitude of helping and protecting PWE. As noted, the restrictions and prohibitions cited by the Guaraní appear to derive from the need to take care of PWE, as heavy work, traveling alone, and being involved in problems are believed to worsen the condition or trigger seizures in PWE.

It’s worth noting that while their perception of people with epilepsy is generally positive, several of the people interview gave advice about avoiding contact between affected people and children or pregnant women.

As the researchers note this raises questions “that could be related to a belief that was not mentioned: possible transmission of the disease to those who are considered the weakest and most defenseless in the community.”

However, their general outlook is markedly positive in light of widespread beliefs about epilepsy being the results of evil spirits or a divine punishment.

In contrast, the Guaraní most frequently cited epilepsy as being caused by a “failure to observe the Yekuaku, a fasting period linked to special events”.

Link to locked anthropology study.

View the original article here

Casting out the epilepsy ignorance demons

The New York Times has a surprising article about stigma surrounding epilepsy in Sierra Leone that describes some quite astounding beliefs about the condition.

Stigma here is based on two myths: that epilepsy is contagious and that it is caused by demonic possession. Dr. Lisk is quick to point out that beliefs about possession traverse societal boundaries. “You think it relates to level of education, of literacy, but somehow it doesn’t,” he said. “Sometimes it’s the most educated people who will tell you that it’s demonic. They say it’s in the Bible.” (Some biblical references to possession have long been thought to describe people with epilepsy.)

As a result, discrimination against people with epilepsy here is blatant and unabashed, and it begins in elementary school. “The school authorities often ask the students with epilepsy to leave,” Mr. Bangura said. “There is the notion that epilepsy is contagious; so when somebody has an attack during school, the perception is that if somebody happens to step on the spittle of an affected student, that would be one way of contracting the disease.”…

“Wherever the kid fell, they circle it and tell people to stay away from it, because that spot is a bad spot,”…

While these beliefs seem outlandish, the idea that epilepsy is caused by demonic possession is still common among many Western churches.

Here’s a video of a pastor of a revival church casting out epilepsy demons in Germany. This is an account of how TDS Ministries cured a young mother of a ‘spirit of epilepsy’ that was attacking her.

And if you’re still not convinced, this page has a testimony from the Bethel Church of how a blind man with epilepsy was not only cured of his seizures but also had his eyeballs grow back (suck on that Big Pharma!)

Needless to say, there’s plenty more where that came from, so we still have a way to go before even the most bizarre forms of stigma are defeated in the supposedly educated West.

Link to NYT piece on epilepsy beliefs in Sierra Leone.

View the original article here

Epilepsy, inside and out

The New York Times has an inspiring piece about neurologist and epilepsy specialist Brien Smith who has just become chairman of the Epilepsy Foundation. Unusually, his interest is more than just professional as he has epilepsy himself.

I was really struck by this part, as it shows how even trained medical professionals can unnecessarily freak out when they see someone having a seizure:

One day during medical school, my classmates and I learned that one of the most well-liked doctors-in-training in the hospital had had a seizure while leading morning work rounds.

The sight of him writhing had caused the other doctors and nurses on the ward to panic. Some stood mute, frozen with fear. An intern, believing that the seizure arose from low blood sugar levels, took his half-eaten jelly doughnut and held it against the mouth of his seizing colleague. Others yelled to the ward secretary to “call a code,” and continued to do so even after another dozen doctors and nurses had already arrived on the floor.

The young doctor eventually recovered. But for many of the medical students and doctors who heard about the episode or were on the wards that day, the dread of that morning would linger long beyond our years of training. Epilepsy was, and remains, a frightening and mysterious malady.

Time and again, I have seen this happen. People call ambulances unnecessarily. People risk the life of the person having a seizure by trying to put something in their mouth (to stop them ‘biting their tongue’). People risk injury to the person by trying to hold them down.

If you want to be one of the few people who don’t freak out when someone has a seizure and if you want to be genuinely helpful, read this brief page on first aid for epilepsy.

And if you have a couple more minutes, check out The New York Times piece on neurologist Brien Smith and his unique insight into the condition. Highly recommended.

Link to NYT piece on Brien Smith (via @mocost).

View the original article here