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What I Learned About Epilepsy at Columbia — and Why It Matters

In July, I completed Introduction to Neuroscience: Understanding the Brain as part of Columbia University's Pre-College Program. During the class, I gained a deeper understanding of the neurological factors behind mental and physical disabilities and diseases. One of the most interesting topics we studied was Epilepsy. After an insightful conversation with my professor about social attitudes toward Epilepsy, I became eager to continue exploring the condition through this blog. This blog post aims to provide a basic understanding of the causes and challenges individuals with Epilepsy face, so the next time you see someone having a seizure, you understand what's going on.


What is Epilepsy?

 

Epilepsy is a brain disorder causing seizures due to abnormal electrical activity in the brain. Epilepsy is diagnosed when an individual experiences two or more unprovoked seizures at least 24 hours apart.

        

An interesting trend I found: Epilepsy is more likely to occur in children and adults over 65. In children, the rapid development of the brain and immaturity of neural connections may potentially lead to excitatory and inhibitory imbalances in neurons and amino acids. In adults over 65, Epilepsy is more likely to occur due to the increased risk of stroke and brain tumors. However, this does not mean that children who get Epilepsy will have it for the rest of their lives. In fact, 74 out of 100 children will be epilepsy-free within 2 years, due to treatments and the maturing of the neural connections in their brain ("outgrowing" Epilepsy).


Types of Epilepsy


Seizures are classified into three main categories, each with numerous types: focal onset, unknown onset, and generalized onset. Here's a brief description of each one:

 

Focal Onset Seizures: Seizures that begin from a specific location in the brain and occur while an individual is completely conscious or has impaired awareness. Physically, this may manifest as muscle twitching or an abnormal sensation in one part of the body, the sudden onset of nausea, involuntary actions such as lip smacking, and freezing.

 

Generalized Onset Seizures: A seizure that affects both sides of the brain from the start, therefore causing someone to have impaired awareness or total unconsciousness. Examples include absence seizures, atonic seizures, myoclonic seizures, and tonic-clonic seizures. Physically, this may manifest as sudden falls, muscle stiffening, and rhythmic jerking muscle movements.

 

Unknown Onset Seizures: When the beginning and location of a seizure cannot be determined, awareness is also not determined until signs of either a focal onset or generalized onset seizure are exhibited. Physically, it will show signs of either a focal onset seizure or a generalized onset seizure.

 

         An individual with Epilepsy may experience one or more of these types of seizures. The media often sensationalizes seizures, provoking fear and discomfort while misleading viewers. The best way to decrease the social stigma around Epilepsy is through spreading awareness and educating individuals about these physical symptoms and understanding what an individual with Epilepsy is experiencing neurologically.

 

Daily Challenges

 

Beyond the seizures themselves, there's a variety of challenges the Epilepsy community faces. During the course at Columbia, we had the opportunity to meet with an individual with Epilepsy and ask questions about living with the disability, which put these challenges in perspective. That conversation truly captivated my interest, as I listened to the various hardships they face daily, from simple chores like grocery shopping, where flickering overhead lights can trigger an episode, to public reactions when they have a seizure while walking in public.

 

There are some solid treatment options for Epilepsy, including medications. However, those medications come with their own challenges, including significant side effects. Drugs like Dilantin and  Keppra can induce fatigue, a side effect that makes it difficult to perform basic tasks and errands. Being aware of these challenges individuals with Epilepsy face helps our community be more inclusive and understanding of those with Epilepsy.

 

The Current State of Epilepsy Research

 

Now that I have a general idea and overview of Epilepsy, I want to delve a bit deeper into its neurological causes. The two leading causes of Epilepsy are genetics and traumatic brain injury (TBI). I was surprised to learn during the Columbia course just how little research exists about the neurological path from TBIs to Epilepsy. Compared to the hundreds of articles about Autism and X, my classmates and I had to piece together information from a handful of studies to understand what's happening in the brain after a TBI to cause Epilepsy.

 

Since I don't have permission to disclose details about the individual we met at Columbia, I'd like to share a story I found on Cure Epilepsy's website about a woman named Wendy, who suffered a TBI during a motorcycle accident in July 1987. Apart from the various other injuries Wendy had, including a fractured pelvis, cracked ribs, and a liver tear, she hit her head very hard — hard enough that she had to have a shunt placed in her brain to relieve the pressure due to the brain swelling. This is an unfortunately familiar story in the Epilepsy community. The brain injuries that result from such an accident result in a type of Epilepsy formally known as post-traumatic Epilepsy (PTE). Here's what happens neurologically: after a TBI, inflammation in the brain occurs due to neuronal damage, just like in Wendy's case. This leads to excitotoxicity, followed by hyperexcitability, where neurons release excessive amounts of an excitatory glutamate neurotransmitter, which stimulates neurons and causes them to continuously fire action potentials without regulation. This constant firing results in the uncontrollable twitches and movements we commonly see when someone is having a seizure.

 

During my conversation with my professor, we discussed the current state of public knowledge regarding Epilepsy. That includes how much stigma there is around the disability, and how much advocacy exists. As a matter of fact, studies have revealed stigma around Epilepsy, showing that about 39.8% of individuals with Epilepsy encounter social stigma – we'll unpack what this looks like in a future blog post. Compared to other disabilities, including those we've talked about on the blog like Autism and ADHD, there really isn't much advocacy for Epilepsy. For example, the Epilepsy Foundation and Autism Speaks are the most prominent organizations for Epilepsy and Autism in the United States, respectively. However, the Epilepsy Foundation raises approximately $17.8 million in annual fundraising, while Autism Speaks raises around $35 million. This isn't even proportional to diagnoses, as 3.4 million Americans are affected by Epilepsy, whereas 5.4 million Americans are affected by Autism. That means that Autism affects about 1.5 times (5.4/3.4 = 1.5) as many Americans as Epilepsy does. However, Autism Speaks raises about double the amount of money that the Epilepsy Foundation does. In my next blog, we'll explore this research gap and its implications on the social life of individuals with Epilepsy.



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