Bringing epilepsy awareness out of the dark ages
Public needs to be educated, says Shannon Sampert.
It is one of the most common brain ailments, affecting more than 65 million globally, yet it remains shrouded in stigma and ignorance. It’s epilepsy, a disease as old as civilization.
According to Epilepsy Canada, tablets regarding medical records from Babylonia dating to 2000 BC accurately describe the different types of epileptic seizures.
In Canada, it is estimated around 139,200 have epilepsy. The good news is, according to a Statistics Canada survey, 39 per cent of those living independently with epilepsy say it does not affect their lives at all. An estimated 44 per cent suggest epilepsy has little or only a moderate effect on their lives. But 18 per cent say epilepsy has affected them quite a bit.
The bad news is, in the same survey, 39 per cent reported negative feelings interacting with others because of their epilepsy, with onequarter saying they felt embarrassed by the condition and 19 per cent feeling they were left out of things.
For much of history, epileptic seizures were viewed to be spiritual, rather than medical, maladies, often considered indicative of demonic possession. In the 19th century, people with epilepsy were considered prone to violence and were often put away in mental institutions.
The misunderstandings about epilepsy continued into modernity. In 1956, 17 U.S. states prohibited persons with epilepsy from marrying. In Alberta, epileptics were routinely sterilized under the Sexual Sterilization Act until 1972, as part of a eugenics program designed to prevent those considered mentally defective from reproducing.
More recent examples show how a lack of understanding about epilepsy can have serious consequences. A little over three years ago, Michael MacIssac was shot and killed by Durham police in Ontario. The police were cleared of any wrongdoing in the incident but his family believes the 47-year-old was in the middle of
A lack of understanding about epilepsy can have serious consequences
a seizure when he was shot.
In 2016, Edmonton police came under criticism in two cases for how they dealt with individuals arrested while experiencing seizures.
An Ontario off-duty police officer was Tasered and handcuffed during a seizure in 2008, prompting him to compile a video outlining how police should react to an epileptic seizure.
Certainly, watching someone experience a generalized seizure can be frightening. But learning what to do and how to react is necessary to remove the mystery surrounding epilepsy.
In this day of public awareness campaigns on vaccinations, hand-washing and respectful treatment of those who are developmentally delayed, it is clear now is a good time to bring epilepsy out of the shadows and provide information so people will know how to act.
Epilepsy Toronto has provided an important tool kit for human resource professionals, including information on what to do if an employee has a seizure. Epilepsy organizations are also working with first-responders to improve their understanding of epilepsy.
But public awareness should not be left up to the charitable sector. Given the number of people affected by epilepsy daily, public health agencies should also make awareness and education a priority.
This is 2017. We know people who have epilepsy are not demonically possessed, but the disease remains a mystery for far too many people — with potentially tragic consequences. It’s time to bring epilepsy out of the dark ages.