March 26th is a very big day for those people who have epilepsy. It is the day that the world is asked to wear purple, which is the color designated for supporting epilepsy. It is also a day that we encourage people to learn more about the disorder. Check out the Purple Day website. Cassidy Megan, who also has epilepsy, started the concept of Purple Day in 2008. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths. Also check out Turn The White House Purple for Epilepsy on Facebook. They are also promoting awareness about epilepsy. March 27th is the National Walk for Epilepsy in the U.S, which will take place on the National Mall in Washington D.C. This is the 5th year for the National Walk for Epilepsy.
Why do I care so much? Well, in 2002 I found our 3 ½ year old son having a seizure and not breathing, which sent us immediately to emergency at the hospital. This is how our struggle with epilepsy began. Since then we have seen many neurologists, endured numerous neurological tests, been on multiple types of seizure medications, and had surgery to implant the Vagal Nerve Stimulator device to prevent or reduce the intensity of his seizures. My son still has occasional seizures. He is also facing serious issues at school as a result of the seizures and the learning disabilities that can go along with the disorder.
Unfortunately this is a common scenario for many parents. Epilepsy has little warning. A healthy child can suddenly be diagnosed with seizures. My wish is for an international effort to spread understanding and support for those with this heartbreaking disease and their families. Take a look at some of the misconceptions that have existed in the world, and in some cases still exist (Examples provided by The Stigma of Epilepsy):
- In Cameroon, Indonesia, Liberia and other African countries, Nepal, Netherlands, and Swaziland (to name a few) perceived epilepsy as an evil thing or that the person was possessed by a demon.
- In Uganda, and other countries, epilepsy was thought to be contagious
- In China and India, people with epilepsy are often prevented from marrying or having children. Even the United States had laws prohibiting people with epilepsy from marrying. The last State to repeal this law did so in 1980.
- In the In the United States of America (USA), 18 States provided eugenic sterilisation of people with epilepsy until 1956.
Many people are afraid to talk about their disease due to the stigma of epilepsy. When most people think of a seizure they picture a “Grand Mal” type event. The terminology grand mal is not even used any more. Recently my son had an encounter with a rescue squad due to a seizure, and the rescue squad were expecting a Grand Mal seizure. I was surprised that they didn’t know more about epilepsy. Often a person with epilepsy will suffer from other types of seizures. They can range from brief absence seizures which are moments of “blanking out,” or they could have drop seizures that cause a person to fall to the ground. Or they could have myoclonic seizures which are quick muscle jerks. There are many types of seizures.
Despite how advanced the world has become, the stigma of epilepsy still exists. Many people still have ignorant perceptions about it. Let’s change the face of epilepsy, and dispel those myths. My son is a child who struggles every day to overcome a disorder that can rob him of his basic ability to learn and thrive.
For more information about the stigma of epilepsy see The Stigma of Epilepsy.
Please visit http://epilepsyfoundation.org/ for more information and provide support.