Epilepsy and Policy: November—National Epilepsy Awareness Month

Image via PMSF

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The Center for Disease Control and Prevention (CDC) counts that 61 million people across the United States have disabilities, 10% of which are invisible disabilities. It is estimated that around 3.13 million adults in the United States have a diagnosis of occurring epilepsy. Invisible disabilities play a large role in an individual’s lives. Having an invisible disability risks puts a person at risk to face discrimination, lack of opportunity, and lack of resources. Policy directly affects persons with epilepsy. Policies affect life insurance, healthcare, and healthcare costs.

There are many reasons someone could become epileptic, the most common reason someone becomes epileptic is genetics. This is called Focal Cortical Dysplasia (FCD). This term is used to describe an abnormal neuron in someone’s brain that triggers a seizure. People don’t have to be born with epilepsy, it can occur very late in life as well. There are infections that cause epilepsy such as: Neurocysticercosis, Cerebral malaria, TORCH infections (toxoplasmosis, rubella, cytomegalovirus, and herpes simplex), and more. 

Over the past eight years, epilepsy medication has increased 277%. Healthcare in America is expensive. This means that surgeries, procedures, medications, and even office visits for epilepsy can harm people who are diagnosed with epilepsy; whether this means it harms mental health, or their finances. When living with epilepsy, life insurance is also very important. Life insurance prices can be too much for many people with epilepsy because of policies being passed regarding it. If you have a more complex case of epilepsy, you’re likely to pay more into a complete plan. 

Epilepsy is a complex chronic disability that affects memory, balance, energy, anxiety, depression, chronic pain, etc. It is only seen when someone has a seizure or seizure activity; these seizures can manifest in many different ways. People with epilepsy can have Tonic-Clonic seizures, Absence Seizures,  Febrile Seizures, Myoclonic Seizures, Tonic Seizures, and many more. All of these seizures are exhausting for the brain.

One of the biggest misconceptions of epilepsy is that every single person that has epilepsy is triggered by flashing lights. According to the Epilepsy Foundation, “About 3 to 5 percent of the 2.7 million Americans with epilepsy (approximately 100,000 individuals) are photosensitive, as indicated by an abnormal response to strobe lights during an EEG.” Individuals with epilepsy are not all affected by flashing lights. Epilepsy has more common triggers that many people are unaware of. It is more likely a person has a seizure when they have a lack of sleep, food, or are stressed. There are plenty more triggers as well. 

Another misconception is that people with epilepsy die when they have seizures, therefore, their seizures must be rare. People with epilepsy can pass away because of a seizure, and usually it is called SUDEP or Sudden Unexpected Death in Epilepsy. The Epilepsy Foundation states, “The risk of SUDEP for an individual with epilepsy is more than 1 in 1,000 per year. However, it occurs more frequently in people with epilepsy whose seizures are uncontrolled. One out of 150 people with poorly controlled epilepsy may die from SUDEP each year.” In 2018, Cameron Boyce, the actor and singer we all knew and loved passed away from SUDEP. Epilepsy is a greedy disease. 

The Epilepsy Foundation offers online Epilepsy training to receive a certificate and a better understanding of how to handle an epileptic episode. This certificate works in tandem with a first aid certificate. It is a ninety minute course that allows the public to train to benefit individuals with epilepsy. This training bridges a divide between people with epilepsy and the general public. It is imperative that a society as a collective starts to address the lack of epilepsy training in public.

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This article was edited by Alissa Mili and Sofia Alvarez.