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Understanding The Brain 2020

Epilepsy: The common disease that’s still in the shadows

iStock / Getty Images Plus / kieferpix

Samuel Wiebe

President, International League Against Epilepsy

Epilepsy affects more than 50 million people worldwide—but most of them aren’t receiving treatment. Why?

Epilepsy seizures are caused by abnormal electrical signaling in the brain. Most people probably think of a seizure as jerking or thrashing, but there are other types too. Some look like the person is ‘spacing out’; during other types, people may see or hear things that aren’t there, scream or make other noises, or collapse on the ground. When someone has a seizure, they usually don’t know what’s going on around them.

Worldwide, most people with epilepsy are not getting the treatment they need

Two-thirds of people with epilepsy can avoid all or most of their seizures by taking daily medicines. Others may be able to have brain surgery, follow a special diet, or receive other therapies. Treatment gives people the chance to lead full, productive lives.

Unfortunately, of the 50 million people with epilepsy worldwide, more than 30 million are not being treated. The ‘treatment gap’ in low- and middle-income countries is estimated at about 75% (so three-quarters of people don’t get treatment), but in some areas of Africa and Asia, it exceeds 90%.

This treatment gap exists for a few reasons. One is a lack of awareness and understanding of epilepsy. Some cultures don’t view epilepsy as a medical condition; they believe that it has a spiritual or supernatural cause, and will visit traditional healers, rather than medical personnel.

About two-thirds of people can avoid seizures by taking medicines. Unfortunately, of the 50 million people with epilepsy, more than 30 million are not being treated.

Historically, people with epilepsy were often discriminated against. Even today they can be targets of bias and human-rights violations. Some countries even accept epilepsy as a valid reason for divorce or marriage annulment.

The name of the disease itself can be demeaning; for example, in some Asian countries, the term for ‘epilepsy’ translates to something like ‘mad pig disease.’

This stigma and discrimination are frightening. People isolate themselves and keep their epilepsy a secret.

Even in countries where treatment is readily available, the death rate in people with epilepsy is twice as high as in the general population. In regions with large treatment gaps, as many as 20% of people with epilepsy will die prematurely, mostly from seizure-related drowning or injuries. Some also die from suicide; suicide risk is two to five times higher in people with epilepsy.

Some people have little to no access to epilepsy treatments

There are more than 25 anti-seizure medicines; some cost as little as $5 US per person, per year. But they are not available in some countries. Others have inconsistent supplies. Many people with epilepsy can have trouble finding enough money to pay for medication – especially if seizures leave them unable to work.

Access to healthcare is another barrier. Neurologists usually diagnose epilepsy and coordinate care, but in many areas, there aren’t enough of these doctors.  

Everything is connected. Fear and stigma can keep people from seeking medical treatment or talking about epilepsy. Therefore, governmental bodies may not know that epilepsy is important, so medicines and medical training are not a priority.

Let’s bring epilepsy out of the shadows, for everyone’s sake

Epilepsy is mostly invisible, unless someone is having a seizure. Within the field, we often talk about ‘coming out of the shadows.’ We want to erase the stigma so that people who have seizures don’t feel ashamed or afraid, and so that everyone can understand how epilepsy affects people’s lives.

Many people with epilepsy and their families have come out of the shadows, but they need support. The public, healthcare professionals, the media, schools—every part of each community has a role in improving epilepsy awareness and breaking down barriers to treatment. Together, we can work toward a world where no person’s life is limited by their seizures.

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