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National Purple Day: Understanding Epilepsy

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National Purple Day was created in 2008 by Cassidy Megan, a nine year old girl from Nova Scotia, Canada, who told her mother she wanted to create a day that would help people with epilepsy not feel alone. Cassidy knew first hand what it felt like to be isolated as she was never invited over for sleepovers due to her epilepsy condition.

Understanding and Supporting Those with Epilepsy

Who is affected?

There are over 3 million people in the United States and over 300,000 Canadians who have epilepsy. There are about 326,000 U.S. children through the age of 15 with epilepsy and more than 300,000 people over the age of 65 suffer from this condition. Overall, there are approximately 50 million people around the world living with epilepsy.

What is Epilepsy?

Epilepsy is a neurological condition that produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain to all parts of the body. What we see with someone who suffers from epilepsy is these normal patterns are interrupted by intermittent bursts of electrical energy that are much more intense than usual. A person’s consciousness, body movements or sensations are affected by these bursts in the brain. These physical changes are called epileptic seizures, which is why epilepsy is called a seizure disorder. When I was doing research about this condition, I was surprised to find that 1 in 100 people are affected by epilepsy and that at least 1 in 10 people will have one seizure in their lifetime.

Joined Forces

In 2008, The Epilepsy Association of Nova Scotia joined with Cassidy to help create what is now known as National Purple Day. In 2009, the New York-based Anita Kaufmann Foundation also joined forces and together they are the global sponsors of National Purple Day. They work with educators, individuals and organizations to help promote epilepsy awareness and get people to talk about and dispel myths about epilepsy.

I had a chance to speak to Debbie Josephs, Executive Director of the Anita Kaufmann Foundation, and she explained that their organization is the only foundation in the world dedicated solely to educating people about seizures. Josephs said that Kaufmann experienced firsthand discrimination at a top spa where they threw her out due to a seizure episode and told her never to come back. She decided at that moment that she wanted to create an organization that would educate people about seizures. This incident changed her life and she created the Anita Kaufman Foundation that now helps educate and support those with epilepsy.

They set up a 5th Grade Education Program in New York, New Jersey, California, Missouri, Florida and Kansas where they come into schools and talk to 5th graders about the condition, how the brain works, anti-bullying and how to provide first aid to someone who suffered a seizure. They also provide Skype seminars for educators interested in providing this program in their school. You can read more about their work at www.akfus.org.

In support of this day, please wear purple and pass along this article with related links on to your friends and family. Both sites provide excellent opportunities to show your support. It is important to educate our children about similarities and differences in people from all walks of life!

How do you help your kids understand and support those with epilepsy and other disorders?

Featured image courtesy of Flickr.

References:

  • The Epilepsy Foundation at www.epilepsyfoundation.org
  • Purple Day at www.purpleday.org
  • Interview with Debbie Josephs, Executive Director of the Anita Kaufmann Foundation, March 22, 2012.

Melissa Northway, M.S. Nutrition, is a writer and author of Penelope the Purple Pirate, Top 25 iTunes storybook app.  She is supporting National Purple Day by hosting a Penelope National Purple Day Facebook Party March 26 6pm PST where treasure will be handed out along with information and links to these organizations.  Go here: http://www.facebook.com/pages/Penelope-the-Purple-Pirate/184530521575620#!/pages/Penelope-the-Purple-Pirate/184530521575620 to enter to win.  And Penelope the Purple Pirate will be on sale March 23rd through March 26th to show support for National Purple Day!

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