By: Megan Benzing
November is just a calm fall month in which most people look past – right after Halloween, but too early for Christmas, November is mainly just known for Thanksgiving and leaf stacks. However, in my family, it is known for one more: Epilepsy Awareness Month.
Many people are aware of epilepsy but aren’t aware of how common it is, the aftermaths, and the struggles that come with this disorder. As we are just passed the middle marker of Epilepsy Awareness Month, I’d like to share some historical facts about this disorder, my personal experience with it, and resources to reach out to as someone struggling with it or know someone who is.
To start, epilepsy or signs of epilepsy date back to B.C. times. One of the oldest findings was a 4000-year-old Akkadian tablet found in Mesopotamia, where inscribed on it was a description of a person with “his neck turning left, hands and feet are tense, and his eyes wide open, and from his mouth froth is flowing without him having any consciousness.” Due to the belief that these episodes of rapid contractions were caused by evil spirits invading the body, the treatment often involved spiritual intervention. Although the Mesopotamians believed spirits and gods were the cause of seizures, the Egyptians proved that seizures can be caused by cortical dysplasia (meaning when the top layer of the brain does not develop properly). Documentation of epilepsy is also found in Chinese texts, dating to approximately 770-221 B.C. A group of physicians published The Yellow Emperor’s Classic of Internal Medicine, which outlined generalized seizures. Traditional principles of Yin Yang Wu Xing were employed to treat epilepsy, consisting of herbs, massage, and acupuncture.
Epilepsy’s spiritually based pathophysiology remained largely unchallenged until around the 5th century B.C. when the School of Hippocrates in Greece hypothesized that the brain might be the root cause of epilepsy. Hippocrates believed that the Sacred Disease (epilepsy), was no more divine than other diseases, but was named “sacred” due to its unique and inexplicable appearance. He also hypothesized that epilepsy could be cured like other diseases, though once it becomes chronic, it is no longer curable. Aristotle, a notable philosopher of the 4th century B.C., hypothesized that epilepsy and sleep were due to similar mechanisms. In his work, On Sleeping and Waking, he theorized that sleep was caused by the evaporations resulting from consuming food, which would subsequently rise and fall in the veins. In later years, his ideas were considered indisputable by the Catholic Church and would influence the scientific community for centuries. Even famous physicians like Galen included Aristotle’s ideas of vapors in his works. The Hippocratic idea that epilepsy was a brain disorder finally began to gain traction in Europe beginning in the 17th century and continuing through the millennium.
From ancient to relatively modern times, people with epilepsy have been invalidated and the subject of discrimination. Until the mid-20th century, in the United States of America, many states prohibited people with epilepsy from getting married, and some even encouraged eugenic sterilization (a.k.a. sterilizing people who are either mentally ill or mentally defective so they cannot reproduce). That process was eventually banned during Skinner v. Oklahoma in 1942 where the Court rejected eugenic sterilization as a legitimate state goal and recognized that procreation was a basic civil right.
Another note of epilepsy is the social struggles of someone with this disorder. People with epilepsy can be subjected to social ostracism, both directly and indirectly. There is a growing body of evidence that a strong social support system is directly correlated with well-being. Often, those with epilepsy tend to be more isolated than those without, resulting in diminished well-being. Even as early as childhood, people with epilepsy begin showing signs of social issues, stemming from lack of inclusion. This social isolation after a childhood diagnosis can negatively impact self-esteem and academic performance There is evidence that people with epilepsy suffer from higher rates of depression, anxiety, psychosis, and attention-deficit hyperactivity disorder (ADHD) than the general population, indicating that this disconnect from society can lead to harmful downstream effects.
Now, to the facts: 1 in 26 people will develop epilepsy in their lifetime. There are over 60 different types of seizures. Up to 10% of people worldwide will have a seizure at some point in their life (although this does not necessarily mean they have epilepsy). Up to 5% of people with epilepsy are affected by flashing lights (called photosensitive epilepsy), so most people with epilepsy do not have seizures triggered by flashing lights.
Finally, to my experience and to additional resources for students in need…
I was diagnosed with epilepsy at the age of 12, after being diagnosed with Viral Meningitis Encephalitis and PRES in April of 2016. I spent my 13th birthday in the hospital and endured about 18 seizures, a mix of both tonic-clonic and focal. The aftermath was that I would have long-term epilepsy. Fortunately, mine is controlled by AEDs (Antiepileptic drugs), but there are many out there who have more severe cases.
After enrolling at the University of Cincinnati, I have met both students and professors who have epilepsy as well. Reaching out to people in similar situations truly does help and if you are ever in need of someone to talk to, I suggest finding a campus organization that focuses on epilepsy or even reaching out to The Epilepsy Foundation or The Epilepsy Alliance.
The Epilepsy Foundation Ohio provides programs and services that support people and families impacted by epilepsy. With the strength of a national organization and network of epilepsy experts, EFO provides national scope and local impact. The Foundation also seeks to educate the public to better understand epilepsy and seizure disorders, including knowing proper seizure first aid.
Whether you have epilepsy, don’t have epilepsy, or know someone with epilepsy, be a part of the solution! Wear a purple ribbon in support of epilepsy. If you’re looking to donate, below are a couple of ways to get involved.