Before you can learn the best ways to share correct information about epilepsy for epilepsy awareness, you must ensure you have the correct information. Although epilepsy is common, affecting around 3.4 million people in the US¹ at any one time, most people don’t know the facts from fiction.
So, we’ll begin with a brief overview of what epilepsy is, what it looks like, and how it’s treated before diving into ways you can help increase epilepsy awareness.
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Epilepsy is a disorder of the brain where a short change in normal brain activity creates what is known as a seizure. Most people think seizures look like an extended shaking fit, but the truth is that seizures are variable and don’t all look the same.
The main (and defining) characteristic of epilepsy is a seizure. These can look very different, depending on the part of the brain that’s affected. Generalized seizures affect both sides of the brain and are considered by most to be the “typical” seizure.
An absence (or petit mal) seizure can cause small symptoms like blinking rapidly or staring off into space. A tonic-clonic (or grand mal) seizure can cause the person to fall to the ground, lose consciousness, have muscle spasms, and cry out; that is to say, sufferers experience symptoms that we typically associate with seizures.
Aside from generalized seizures, a person with epilepsy may also experience focal seizures. These affect just one area of the brain. They can be simple (i.e., causing a small change in sensation), complex (i.e., becoming dazed and causing confusion), or secondary general (i.e., a focal seizure followed by a generalized seizure).
As you can see, seizures happen in various ways and are often difficult to detect. You may not even notice when someone is experiencing a seizure, especially if it’s happening in a high stimulus environment. But you don’t need to be worried about a seizure unless it lasts over 5 minutes or unless the person gets injured.
There is no easy one-treatment-solves-all treatment that exists for epilepsy. Each person has a different treatment experience, and something that works for one person might not work or may be less effective for another person. However, many treatment options are available for a person with epilepsy.
Medical treatments for epilepsy include anti-seizure medicines. These can limit the spread of seizures in the brain. You should consult a healthcare professional who will prescribe the appropriate medicine and dosage for your unique situation.
However, medicines only work in two out of every three people with epilepsy.
Focal seizures can be treated by surgically removing the section of the brain causing the seizure. This will hopefully completely stop the seizures or make it easier to control them with medicines. Epilepsy surgery is relatively uncommon and mostly occurs when the seizure is in the temporal lobe.
For some people, neither medicine nor surgical interventions can control seizures. When this happens, the usual treatment is a ketogenic diet or an implanted device that stimulates a nerve in the chest called the vagus nerve. Both of these treatments help control seizures in some individuals.
Most people have heard about epilepsy, with approximately 95%² having heard of the condition. However, how epilepsy is portrayed in the media means that many of these people are unaware of how common and varied seizures can be. You can help change that by following some of the below suggestions:
Although most seizures end in a few minutes, you can help support someone with a seizure by learning the appropriate first aid.³ This can include calling emergency support if necessary, helping the person get home, and keeping them comfortable.
Some people with epilepsy identify as having a disability because the frequency or severity of their attacks makes it difficult to carry out regular tasks. You could help by advocating⁴ for affordable housing, transportation, or social support within your community. This could be as simple as supporting a low-light grocery hour for those with sensory conditions.
Epilepsy is a lifelong condition and is thus common in children. You can help by advocating for childhood education about epilepsy through programs such as the CDC’s BAM⁵ program, which teaches children all about epilepsy.
If you aren’t sure how you can help on your own, try supporting a foundation or initiative designed to support individuals with epilepsy. You can find a local foundation using this tool.⁶
November is epilepsy awareness month,⁷ a national initiative since 2003 to raise awareness of epilepsy to increase advocacy and support. Here are some FAQs about epilepsy awareness month:
Epilepsy awareness is associated with the color purple,⁸ as lavender is the international flower of epilepsy.
Epilepsy awareness day doesn’t occur during epilepsy awareness month. Epilepsy awareness day occurs on March 26th and is a global event to help raise awareness of epilepsy worldwide.
Because epilepsy has many forms and treatment options, awareness is important. Awareness of the difficulties people with epilepsy face can help bring compassion and care to those needing it.
Epilepsy is a complex but common condition. However, it’s often misleadingly portrayed in the media. It can have various symptoms, and we have yet to find a treatment that works well for everyone. Epilepsy awareness is important in funding research and treatment programs for this common condition.
Frequently asked questions about epilepsy | Centers for Disease Control and Prevention
Seizure first aid | Centers for Disease Control and Prevention
Building inclusive communities | Centers for Disease Control and Prevention
Epilepsy | Centers for Disease Control and Prevention
Find your local epilepsy foundation | Epilepsy Foundation
Epilepsy awareness month 2021 | Cerebral Palsy Guide
What is purple day | Epilepsy Society