About epilepsy

A condition most people have heard of, and few people recognise.

Globally, 1 in 26 people have epilepsy. Although it is one of the earliest documented neurological conditions, there is still stigma surrounding epilepsy. Our organization believes that such stigma stems around a lack of awareness on how to help such individuals when they are seizing. Thus, it is our mission to provide resources that allow community members to support and understand those with epilepsy. Because managing seizures shouldn’t be a problem that individuals suffer from alone, it should be a problem that we as a society work together to help. We hope you find our resources useful in your communities!! - The Seizure Space Team

What is Epilepsy?

Epilepsy is a neurological condition where there are abnormal bursts of electrical activity in the brain, leading to frequent seizures. In television and the media, seizures are often portrayed as violent shaking and aggressive movements, however every patient’s seizure is different. There are over 40 specific types of epilepsy and around 30 types of epileptic seizures. As a community it is crucial to understand that seizures and epilepsy can come in many shapes and sizes and that we need to provide different support for people with different types of epilepsy. According to the International League Against Epilepsy (ILAE), epilepsy can be separated into 4 types: focal, generalized, Combined generalized and focal, and unknown onset. Focal seizures refer to seizures that originate from abnormal electrical activity in only one localized area of the brain. Generalized seizures refer to seizures that originate from both hemispheres or a large area of the brain. Combined Generalized and Focal epilepsy is where patients can get both focal and generalized seizures. With unknown onset seizures, the seizures are either focal or generalized but it’s not possible to determine which part of the brain the seizure originates from. Sometimes this can be determined later on once doctors have more information on the seizure patterns of the patient.

Seizure and Epilepsy Diversity

Here at The Seizure Space we prioritize acknowledging the diversity of seizures and epilepsy. Epilepsy can look very different in different people and it is important that all of their seizures are understood and supported. Our tools and resources aim to address this diversity and provide bystanders and communities with the knowledge to do this.

What our Organization does

Here are all the resources we provide to help the support of those with epilepsy:

Photosensitivity

Between three and five in every hundred people with epilepsy are photosensitive: flashing lights, strobing, and some high-contrast moving patterns can trigger a seizure. It is more common in children and young people, and it is far rarer than the public assumes - most people with epilepsy are not affected by light at all.

Treatment

Around seven in ten people with epilepsy could become seizure-free with appropriate anti-seizure medication. That figure hides a serious gap: roughly three quarters of people with epilepsy in low-income countries never receive the treatment they need. For those whose seizures do not respond to medication, options can include surgery, nerve stimulation devices, or dietary therapy.

What people with epilepsy tend to ask for

• Learn what to do, so nobody has to improvise around you.
• Do not call an ambulance reflexively - for many people a seizure is routine, and an unnecessary hospital trip is expensive and exhausting.
• Do not treat a seizure as a spectacle. Clearing onlookers is a kindness.
• Understand that confusion and exhaustion afterwards can last hours.
• Ask what helps. Most people know exactly what they need.