March 26: Purple Day for Epilepsy Awareness

Today’s blog is dedicated to Purple Day, a day to wear purple and raise awareness about epilepsy.    

Purple Day was started by a young girl from Nova Scotia, Cassidy Megan, in 2008.  Within only a few years, Cassidy’s dream to “bring people from around the world together to teach others about epilepsy” became a reality as Purple Day spread from a local, grass-roots movement, to an international phenomenon.  

Cassidy Megan, 16 y

Some “Quick Facts” from the Purple Day website:

There are approximately 50 million people around the world living with epilepsy.

It’s estimated that 1 in 100 people have epilepsy

There are more than 300,000 Canadians living with epilepsy.

There are approximately 2.2 million Americans living with epilepsy.

Epilepsy is NOT contagious. Epilepsy is NOT a disease. Epilepsy is NOT a psychological disorder.

Cassidy Megan chose to highlight SUDEP (Sudden Unexplained Death in Epilepsy) on her Facebook page today.  Here’s what she has to say:

I created the idea of Purple Day® in 2008 because of my own experience with epilepsy. I wanted to help other people living with seizures, and their families, and let them know that they are not alone.

By drawing attention to SUDEP, I hope to bring the same reassurance to families impacted by death in epilepsy and also to people living with the worry of SUDEP. There are others who are going, or have gone, through the same thing and who can help.

From the Danny Did Foundation:

A death is referred to as SUDEP when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are:

• The person has epilepsy, which is defined as recurrent unprovoked seizures.
• The person died unexpectedly while in a reasonable state of health.
• The death occurred suddenly and during normal activity (often during sleep).
• An obvious medical cause of death could not be determined at autopsy.
• The death was not the direct result of status epilepticus.

My daughter, Sarah, has a form of epilepsy called Dravet syndrome, which is very difficult to control.  Dravet syndrome carries a higher risk of SUDEP than other forms of epilepsy.  Another common cause of death for children with Dravet syndrome is a prolonged seizure called status epilepticus.  Sadly, the Dravet community has lost 5 children, that I know of, to seizures and SUDEP so far this year.  

 I ask that all of my meditating friends do a Metta meditation today sending lovingkindness to all the people of the world affected by epilepsy and SUDEP.  

 

May you be happy. May you be well. May you be safe. May you be peaceful and at ease.  

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