History of Epilepsy Awareness and Where We Are Today
Last updated: November 2022
Since 1969, the month of November has been named National Epilepsy Awareness Month by the Epilepsy Foundation. The color purple is symbolic of this awareness campaign. People who are diagnosed and epilepsy and their family members or support system wear purple to help spread awareness of epilepsy, improve quality healthcare that is affordable, end discrimination due to epilepsy, and develop new research-driven therapies through fundraising efforts.
Social acceptance of epilepsy as a treatable and livable condition has come a long way but still has a long way to go to be fully inclusive and treat those living with seizures with the respect they deserve.
A condition steeped in myths and stigma
A paper titled "The History of Epilepsy: From Ancient Mystery to Modern Misconception" published by the National Institutes of Health states that epilepsy's long history can be traced back to a 4000-year-old Akkadian tablet found in Mesopotamia. Epilepsy was originally thought to be caused by spirits and it was not until Hippocrates who first hypothesized the idea that epilepsy was attributed to the brain. People who have suffered seizures have endured discrimination for centuries. Even in the 1970s, people were turned away from dining at restaurants due to epilepsy.1
It was not until large health organizations that advocate for awareness and education took action that the social stigma surrounding epilepsy began to change. Even still there is discrimination today that people who live with epilepsy face. They can feel isolated and unable to participate in normal daily activities like driving a car, keeping employment, or enjoying social events like concerts or plays that may have atmospheres that could trigger a seizure. People with epilepsy also face civil rights violations in today's modern times.
The changing history of epilepsy over time
The treatment of epilepsy has transformed over time as well. In ancient times, epilepsy was primarily treated with spiritual methods as it was thought to be caused by evil spirits. Chinese medicine used herbal methods and acupuncture to treat seizures. Modern medicine today has been successful at using pharmacological methods to treat epilepsy.1
There is still so much unknown about seizures and what causes them. Scientific research needs to be supported to advance new therapeutics that provide better quality of life to people living with epilepsy.
There is still so much more progress to go
I have a teenage son who lives with epilepsy due to a genetic deletion. His epilepsy is caused by a syndrome that impacts his brain and the ability for his brain to regulate electrical signals. We help our son manage his epilepsy through a special diet and two different anti-epileptic medications.
The diet is expensive and time-consuming, impacting our quality of life and his. He is limited in the types of foods he can eat as well as the ability to dine out due to this special diet. Our son is also non-verbal and has developmental delays. We face being isolated from peers in both the school system and in society. He is not considered a typical teen because of his dual diagnosis and many people do not take the time to understand him or interact with him.
How to support those living with epilepsy
We have a long way to go to be inclusive of people that are different. As a caregiver to a special individual, I believe it is okay to ask questions and make better attempts to be inclusive if you are sincere.
If you are interested in finding out more information about epilepsy, visit your local Epilepsy Foundation online. Consider donating to support epilepsy research, which will advance quality of life for people diagnosed with seizures. Offer to support someone living with the disease by simply being a good friend and asking how you can support them in their journey.
Since being diagnosed with epilepsy, has your memory been impacted?