Epilepsy Awareness Helps Break Stigma Of Disorder

By: Savannah Scarborough, Follow South Jersey Intern

SOUTH JERSEY – Epilepsy, a highly misunderstood brain disorder that affects 3.4 million people and their families nationwide, is recognized this November by the Epilepsy Foundation as National Epilepsy Awareness Month (NEAM). As the world’s fourth most common neurological disorder, it is important to know the symptoms, treatments, misinformation, facts, and statistics regarding epilepsy. 

This brain disorder causes recurring, unprovoked seizures caused by surges of electrical activity in the brain that change or disrupt the way messages send between brain cells. The impact of epilepsy on an individual can vary depending on the type, frequency, and severity of seizures, the areas of the brain affected, how the individual responds to treatment, and underlying brain abnormalities that are present. 

Treatment for all types of epilepsy can help individuals reduce the number of seizures they have or can stop them entirely. Treatments include consuming medicines called anti-epileptic drugs (AED’s), surgery to remove a small part of the brain that is causing the seizures, a procedure to put a small electrical device inside the body that can help control seizures, or a special diet called the ketogenic diet. 

Some individuals require treatment for the rest of their lives, but many stop treatment if their seizures disappear over time. Furthermore, if an individual knows what triggers their seizures and can avoid them, treatment may not be necessary at all. Meeting with your doctor about which treatments are right for you is important before anything else. 

There are many triggers of epilepsy. These triggers can include a specific time of day or night, sleep deprivation, illness, flashing bright lights or patterns, excessive use of alcohol, drug use, stress, menstrual cycle or other hormonal changes, not eating well, dehydration, specific foods or medications, and missed medications. 

The color purple is often used to represent and show epilepsy support. Cassidy Megan is credited with starting the purple movement. Since she was seven, Cassidy has experienced focal impaired awareness epilepsy. When she was younger, she told her mom she wanted to do something to raise awareness for epilepsy. From there, Cassidy decided purple would be the color to represent the community. 

“There are so many different shades of purple, just like there are so many different types of epilepsy and seizures,” said Cassidy. “Purple can represent every unique person, experience, and perspective of the epilepsy community.” 

There are many different types of seizures, and not all are the same. There are new terms developed by the International League Against Epilepsy to describe and classify seizures to make the names of each more accurate, less confusing, and more descriptive of what occurs. The three major categories are focal onset, generalized onset, and unknown onset. For more information on these categories, visit https://www.epilepsy.com/what-is-epilepsy/seizure-types. 

Here are many important facts about epilepsy that some individuals have consumed misinformation on: 

● You cannot swallow your tongue during a seizure. It is physically impossible

● It would be best if you never force something into the mouth of an individual having a seizure

● Do not restrain someone from having a seizure. Most seizures will only occur for a matter of seconds or minutes and will end on their own 

● The correct seizure first aid is simple: Stay. Safe. Side. Stay with the individual seizing, keep them safe, and turn the person onto their side 

● Epilepsy is not contagious 

● Most individuals with epilepsy can do everything someone without it can do 

● Individuals with epilepsy can work jobs that include responsibility and stress ● Epilepsy is a chronic medical condition that can be treated 

● Epilepsy is not rare, and you can die from epilepsy, however, it does not happen frequently ● What happens during a seizure can and will look different for everyone 

● Individuals with epilepsy are not physically limited in what they can do 

Epilepsy is rigorously stigmatized. These individuals experience discrimination in school, the workplace, and other environments. Until 1956 they were forbidden to marry in 17 states, and the last state to get rid of this law did so in 1980. 

In 1990, the Americans with Disabilities Act (ADA) became law. The ADA prohibits discrimination and guarantees the civil rights of people with disabilities. Hence, in 2008, President George W. Bush signed the ADAAmendments Act that restored the original intent of Congress and clarified the definition of “disabilities” to include individuals living with epilepsy in the act. 

However, while the ADA made many positive changes to the law for individuals with disabilities, until the Affordable Care Act (ACA) in 2010, people with epilepsy were denied coverage for pre-existing conditions. In 2005, nearly 36% of people with epilepsy were refused coverage. 

Any brain has the potential to seize, and any individual may be diagnosed with epilepsy if they have one or two unprovoked seizures with a high risk of more. However, not all seizures lead to an epilepsy diagnosis. Many seizures also relate to brain injury or a family trait, but the cause could be a symptom of another medical issue or, frequently, can be completely unknown. 

This year’s theme for the Epilepsy Foundation 2022 National Epilepsy Awareness Month is “There is no NEAM without ME.” The theme highlights the Foundation’s efforts with the epilepsy community to celebrate people with epilepsy and their important role in spreading awareness during NEAM. 

This month is an important time to build awareness for epilepsy through advocacy. Join others in encouraging your Governors, legislatures, and local elected officials to issue resolutions or proclamations recognizing NEAM. 

As you learn more about epilepsy this month, educate others. Use #MyNeamAction on social media to share how you are using your voice to educate others about epilepsy and seizure awareness and safety.

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