Epilepsy shouldn’t be a death sentence

By Shannon Sampert

Originally published in the Winnipeg Free Press on May 25, 2017

Epilepsy shouldn't be a death sentence

Photo courtesy of Facebook

On May 1, 2016, Errol Greene died while in the Winnipeg Remand Centre following two epileptic seizures. According to reports, after the 26-year-old man suffered the seizures, he was rushed to the Health Sciences Centre, but he did not survive. His family is now suing the province, and a provincial inquest into his death has been called by the acting medical examiner.

But it raises a point: who dies of epilepsy in this day and age?

It turns out the risk of dying is 1.6 to three times higher in people with epilepsy than in the general population. According to the Epilepsy Foundation, “Most people don’t understand how serious seizures can be. They either think that seizures are not a problem or that everyone may die from them. The truth lies somewhere in between. The types of problems people may have range from injuries, the effect of repeated seizures on the brain, seizure emergencies and death.”

And epilepsy itself is one of the most common brain disorders, with more than 60 million people worldwide diagnosed with the disease. However, for most people it can be controlled with medication, and proper treatment during and after a seizure can limit injury and death.

This is not a new disease. The first reported cases of epilepsy date back to the beginning of civilization. But it is a disease that has been shrouded in myths and stigma.

Epileptic seizures were often considered to be signs of evil possession. In the 19th century, people with epilepsy were considered prone to violence and those experiencing seizures were often put away in mental institutions, locked away because they were viewed as crazy. Until 1956, 17 American states prohibited persons with epilepsy from marrying. In Alberta, epileptics were routinely sterilized under the Sexual Sterilization Act until 1972.

As a young woman in the late 1970s, I was told I couldn’t work in a convenience store because of my epilepsy, and my college crush broke up with me when he found out about my seizures because he was fearful I would pass on the disease to our children. Growing up, epilepsy was something you talked about only in whispers, and those with epilepsy were considered developmentally delayed and incapable of living a fully productive life.

These stigmas based on ignorance remain. A recent survey in Great Britain suggested that about a quarter of those surveyed would not want to work with a person who has epilepsy.

But surely, in this day and age, shouldn’t epilepsy be better understood, particularly by those who are mandated to provide care? Shouldn’t the protocols for caring for a person with epilepsy be mandatory, particularly in an institutionalized setting such as a remand centre?

Corey Shefman, the Toronto lawyer representing Greene’s wife, Rochelle-Lynn Pranteau, and her four children says, “There’s a real lack of understanding about epilepsy in the general population,” adding that such misconceptions extend to the prison setting to “people whose job it is to care for individuals deprived of their autonomy.”

Shefman says in prison, inmates are dependent on the institution to care for them, but there is a lack of understanding on how to treat epilepsy, the effects of seizures and even what they look like. This may have been what killed Greene.

In the statement of claim filed by Greene’s family, it is alleged that Remand Centre staff would not provide Greene with his seizure medication, even though he made several requests. Even one missed dosage could result in a seizure, and, according to reports, Greene was without medication for three days.

Pranteau said she was on the phone with her husband when he had his first seizure in the Remand Centre on May 1. According to media reports, Greene was then shackled and put face down while he convulsed. He then suffered a second seizure while restrained, and was taken to the hospital, where he died.

This is 2017.

People shouldn’t die of epilepsy any more, particularly when access to their medication could limit their seizures. More to the point, people should not die because of ignorance about a disease that affects so many.

Shannon Sampert is the former perspectives and politics editor of the Winnipeg Free Press. She is currently the editor-in-chief and director of EvidenceNetwork.ca at the University of Winnipeg. Her views are her own.

May 2017

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