Although considered the “sacred disease” by the ancient Greeks, in many
primitive societies epilepsy was believed to be associated with sin and
demonic possession and ancient Romans thought it was contagious. People
with epilepsy were feared and cast out of their communities or punished
for their seizures. Seizures were often considered bad omens. There are
references in the New Testament to epilepsy as a form of madness, and
the notion of people with epilepsy as “lunatic” held widespread
currency throughout the medieval period.
By the late 1600s the notion of contagion gained fashion. People with epilepsy were sometimes incarcerated in mental hospitals. They were kept separate from the mentally ill to protect their fellow prisoners from "catching" epilepsy.
As recently as the early 1900s, King George V and the British royal family kept the youngest son, John, out of the public eye because of his epilepsy. When he died in 1919 at the age of 13, his existence was almost unknown.
Further dimensions of the stigma of epilepsy are disruptiveness, aesthetic aspects, peril and origin. Most people have not seen a seizure although those observing them may stand by powerlessly and in terror. Depending on their specific manifestations, seizures may also be aesthetically unpleasant to observers. Moreover, the issue of peril is echoed in old ideas of epilepsy as contagious. All of these aspects, plus the legacy of the old ideas about epilepsy as the product of malign forces or sinful behavior, can result in the shame that is often associated with the disorder. It might be thought that people with epilepsy are somehow morally culpable for their condition. Even now, adults with epilepsy, children with epilepsy and their parents are often ashamed of their condition, keep it secret or withdraw from society.
Today, epilepsy affects three million Americans—about one in one hundred—more than multiple sclerosis, cerebral palsy, Parkinson’s disease and muscular dystrophy combined. For most people, it is a life sentence and for many it is a death sentence. More people die each year from epilepsy and related causes, such as head injury or drowning, than die from breast cancer, yet sadly, many of them are our children.
Epilepsy’s incidence is increasing—unlike other diseases, which are declining due to early detection, prevention or treatments that can cure—because populations at greater risk of epilepsy such as premature babies, people with autism, people with Alzheimer’s and our troops who suffer traumatic brain injury, are on the increase.
Epilepsy remains a misunderstood, stigmatized, obscure disorder, and is therefore grossly underfunded. About one-third of the total number of Americans with epilepsy have Parkinson’s disease, yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the funding from the government and at least ten times the funding from private entities compared with epilepsy.
People with epilepsy suffer debilitating and sometimes lethal seizures and/or horrific side effects from medication.
Each of us has the ability to change all of this for the millions of people who suffer from seizure disorders, for their families, for their friends and for society. We can promote education, awareness, understanding, empathy and advocacy. It matters, and it just takes sharing a simple narrative to dispel the myths. Start by sharing Calvin's story with your friends, family and colleagues. It's not hard. Just do it one story at a time.
To donate to epilepsy research go to:
http://www.calvinscure.com/
Sources:
Epilepsy: A Comprehensive Textbook 2nd Edition © 2008 Lippincott Williams & Wilkins
A history of stigma and superstition Baylor College of Medicine
By the late 1600s the notion of contagion gained fashion. People with epilepsy were sometimes incarcerated in mental hospitals. They were kept separate from the mentally ill to protect their fellow prisoners from "catching" epilepsy.
As recently as the early 1900s, King George V and the British royal family kept the youngest son, John, out of the public eye because of his epilepsy. When he died in 1919 at the age of 13, his existence was almost unknown.
Further dimensions of the stigma of epilepsy are disruptiveness, aesthetic aspects, peril and origin. Most people have not seen a seizure although those observing them may stand by powerlessly and in terror. Depending on their specific manifestations, seizures may also be aesthetically unpleasant to observers. Moreover, the issue of peril is echoed in old ideas of epilepsy as contagious. All of these aspects, plus the legacy of the old ideas about epilepsy as the product of malign forces or sinful behavior, can result in the shame that is often associated with the disorder. It might be thought that people with epilepsy are somehow morally culpable for their condition. Even now, adults with epilepsy, children with epilepsy and their parents are often ashamed of their condition, keep it secret or withdraw from society.
Today, epilepsy affects three million Americans—about one in one hundred—more than multiple sclerosis, cerebral palsy, Parkinson’s disease and muscular dystrophy combined. For most people, it is a life sentence and for many it is a death sentence. More people die each year from epilepsy and related causes, such as head injury or drowning, than die from breast cancer, yet sadly, many of them are our children.
Epilepsy’s incidence is increasing—unlike other diseases, which are declining due to early detection, prevention or treatments that can cure—because populations at greater risk of epilepsy such as premature babies, people with autism, people with Alzheimer’s and our troops who suffer traumatic brain injury, are on the increase.
Epilepsy remains a misunderstood, stigmatized, obscure disorder, and is therefore grossly underfunded. About one-third of the total number of Americans with epilepsy have Parkinson’s disease, yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the funding from the government and at least ten times the funding from private entities compared with epilepsy.
People with epilepsy suffer debilitating and sometimes lethal seizures and/or horrific side effects from medication.
Each of us has the ability to change all of this for the millions of people who suffer from seizure disorders, for their families, for their friends and for society. We can promote education, awareness, understanding, empathy and advocacy. It matters, and it just takes sharing a simple narrative to dispel the myths. Start by sharing Calvin's story with your friends, family and colleagues. It's not hard. Just do it one story at a time.
To donate to epilepsy research go to:
http://www.calvinscure.com/
Sources:
Epilepsy: A Comprehensive Textbook 2nd Edition © 2008 Lippincott Williams & Wilkins
A history of stigma and superstition Baylor College of Medicine
