Celebrating Purple Day
Celebrating Purple Day
March 26 is Purple Day – an International Epilepsy Awareness Day that was started by a then 9 year old girl in Canada, and is now celebrated worldwide. This is a day to support epilepsy awareness!
This is something new. It started in 2008, so it’s only 9 years old – the age founder Cassidy Megan was when she started it. She “wanted people around the world to come together and teach others about epilepsy.” Empowering Epilepsy shares that mission.
Epilepsy is a chronic disease that affects more than 65,000 people in Northeastern Ohio and almost 3 million Americans. Those numbers do not include those with epilepsy who are undiagnosed, and include many children, seniors and veterans. Epilepsy affects anyone, anywhere. There are no boundaries to whom can be affected by seizures. And, more people die from epilepsy then breast cancer.
Over 40 different types of seizures exist, and many are hard to detect and classify. So many different things can happen when a seizure takes place that the definition, or classification of seizures, has changed as recently as December, 2016. (See the Seizure Classification List below.)
Seizures used to be divided into two categories – Focal and Generalized seizures, but are now classified into three categories – Focal Onset, Generalized Onset and Unknown Onset. These categories help define where in the brain the seizures are taking place, if doctors are able to determine where they begin. Focal Onset Seizures start in one area of the brain. Generalized Onset Seizures start all over the brain. Unknown Onset Seizures describe when the beginning location of a person’s seizures unidentifiable. All seizures fall into these three categories, and are further defined from there based on what happens to an individual after the seizure begins.
Types of seizures can include (and since the definitions have recently changed, we will use the former vocabulary people are more familiar with to describe them) Absence Seizures, Atonic Seizures, Clonic Seizures, Complex Partial Seizures, Gelastic Seizures, Grand Mal – or Tonic Clonic Seizures, Myoclonic Seizures, Simple Partial Seizures, Tonic Seizures, and many others. Many people with epilepsy can have more than one type of seizure.
Also, epilepsy can be further classified into Epilepsy Syndromes that include Benign Rolandic Epilepsy, Childhood Absence Epilepsy, Doose Syndrome, Dravet Syndrome, Infantile Spasms, Juvenile Myoclonic Epilepsy, Landau-Kleffner Syndrome, Lennox-Gastaut Syndrome, Ohtahara Syndrome, Rasmussen’s Syndrome, Reflex Epilepsy, Temporal Lobe Epilepsy, and more. Without getting any more complicated, epilepsy is a very diverse disease that can go undiagnosed for a lifetime.
Personally, I grew up with epilepsy. When I was 8 years old, I was struck by a car while walking home from school. While I didn’t break a bone, I experienced a traumatic brain injury. Soon after, I began getting these different feelings in my chest that I couldn’t describe to anyone. I asked my parents if their chest falls asleep, like their arms and legs fall asleep, because that was the only way I, as a then 8 or 9 year old, could describe what I later discovered to be my seizures. I was finally diagnosed when I was 12, after my parents saw me have a seizure when I was talking to them in our kitchen.
As we were talking, I started getting that feeling in my chest. It always made me breathe a little heavier, with my goal to push the feeling out with my breath. I would then begin to swallow hard and smack my lips. Also, I would clench my right fist. That was because, I later discovered, the seizures occurred in the left side of my brain. I was diagnosed with Temporal Lobe Epilepsy and Complex Partial Seizures.
Living with epilepsy was not easy. To start, seizures can happen at any time and any place. My goal, I learned, was to try and hide them because I wanted people to think I was “normal”. As a result, if I felt like a seizure was going to take place (I became very intuitive), I would stay home or go to a place, like the bathroom, where others couldn’t see it. That wasn’t always an option, as most often, people can’t predict when a seizure would happen. But, if I could find a way, hiding it was a priority.
This is because of the stigma affiliated with epilepsy and seizures. Losing control of our bodies is considered a liability. Without the understanding of what seizures are, what happens when different types of seizures take place, and the fact that a seizure is not completely over when the shaking or abnormal body activity stops is why the centuries old stigma still exists. We need to change that.
That is why we need your help!
- We need you to google epilepsy and seizures and read articles to learn more about what happens during a seizure and what you can do to help. (You don’t need to stick anything in their mouth, force them to sit or lie down, administer CPR, or give something to drink.)
- We need you to understand that a person with epilepsy is a regular, ordinary person, and can do anything a regular, ordinary person like you can do when they are not having a seizure.
- We need you to become more accepting of people with epilepsy. You can do that by learning more to better understand seizures and what people with epilepsy go through, most often by themselves, on a daily basis.
- We need you to understand the many obstacles people with epilepsy face with friends, school, jobs, dating, other health issues, work, driving, medication side effects, memory and more.
- We need you to understand that people with epilepsy often get arrested for disorderly conduct, shoplifting, indecent exposure, and more when they are actually having a seizure.
- We need you to realize that once we have a seizure, while we try to be perfect afterward and do everything we are “supposed to do,” that we may, instead, need to go lie down for a while, as the inside of our brain “heals” from the seizure.
- We need you to provide rides for people with epilepsy when their driver’s license is taken away.
- We need you to not make us feel like a burden.
- We need you to understand that depression and anxiety can accompany seizures, and we can’t “control” it.
- We need jobs, as people with epilepsy are often fired or not hired because they are considered a liability, but are then denied Social Security Disability because we “can” work.
- We need you to show us what we can do while living with epilepsy. Everyone has a tendency to remind us of what we can’t do because we may have a seizure.
- We need you to donate to organizations focused on epilepsy so we can increase epilepsy awareness, help people with epilepsy discover what they can do, and increase funding to find cures for all types of seizures.
…and today and tomorrow, we need you to wear Purple to show your support of people with epilepsy!
If you live in Northeast Ohio, you can also come and bowl with Empowering Epilepsy today, Sunday, March 26, 2017 from 2:00 – 8:00 p.m. at AMF Riviera Lanes in Fairlawn to show people with epilepsy what they can do while creating positive, lasting memories.