November is Epilepsy Awareness Month. Epilepsy is a neurological disorder that can be identified by seizures, which are electrical discharges in the brain that can cause mild to severe symptoms, including unconsciousness and memory loss. There are over 30 types of seizures, but the most common ones are tonic-clonic, atonic, absence, myoclonic, and focal. Epilepsy affects 50 million people worldwide every year, so it is considered a very common disorder to have.
I was born with epilepsy, but we did not find out until 2002, when I was three years old and had a grand mal seizure, also known as a tonic-clonic seizure. After tests, we discovered I was also having absence seizures every few minutes. I experienced tonic-clonic seizures about once a month until I had brain surgery in August 2010, which successfully got rid of all my seizures.
Until then, my seizures would happen usually once a month, mostly during a new moon and especially if there was a drop in the barometric pressure due to a storm. In Alabama, it usually storms a lot!
Every person is different, but my first red flag that a seizure would be starting was when my lungs would stop working. My parents would make sure the oxygen tank was nearby at home and would have Diastat on hand whenever we went anywhere. But I am fully aware now that epilepsy affects people differently.
The awareness ribbon color for epilepsy is light purple, and the awareness symbol is a purple seahorse. The symbol honors the part of the brain that shares the same family name as the seahorse, hippocampus. The flower that symbolizes epilepsy is lavender. Lavender often represents isolation and loneliness, which is how you feel when you have epilepsy.
About 2,500 years ago, ancient Egyptians used lavender in the mummification process. In Latin, lavender comes from the word “lavare,” which means “to wash,” and that is what the Romans did because lavender was mostly used in bathhouses at the time. Interestingly, by the time of the Middle Ages, lavender was used as a medicine for epilepsy.
Throughout history, many famous people have had epilepsy, such as President Theodore Roosevelt and the musician Prince. Other famous people in recent years include Olympic athlete Dai Greene and Disney Channel actor Cameron Boyce.
In addition to Epilepsy Awareness Month, which started in 1969 and was formally declared by Congress in 2003, Purple Day was started in 2008. It is one whole day dedicated to epilepsy awareness on March 26.
For Purple Day in March or Epilepsy Awareness Month in November, you can do different things to spread awareness. One is having a party dedicated to epilepsy and maybe use purple decorations. Of course, make sure the party does not have any flashing lights, and make sure the party includes sensory-friendly activities as well. Another idea is to wear purple to show awareness in public and be ready to share facts. You can also help out any of the charities and foundations that have epilepsy as their main focus.
Epilepsy Awareness Month is important because it helps to debunk all the myths and popular false beliefs people have spread over the years. I enjoy telling people my experience with epilepsy, especially at Camp ASCCA. I hope that every camper I tell my experience to learns something from it and that those who may have epilepsy themselves know they are not alone.
