Purple Day Raises Awareness About Epilepsy
March 26th is Epilepsy Awareness Day, or, “Purple Day,” a day set aside to recognize the challenges faced by those burdened with epilepsy and their caregivers and families. On this day, we pause to remember that epilepsy is a nondiscriminatory disease that can strike anyone, anywhere, at any time.
The most recent statistics are staggering:
• One in 26 people will be diagnosed with epilepsy or another seizure disorder at some point in their lives.
• Today, 65 million people around the world, 3.4 million people in the United States and more than • 400,000 people in Florida have epilepsy.
• There are approximately 150,000 new cases of epilepsy in the United States each year.
• One-third of those with epilepsy live with uncontrollable seizures because no available treatment works for them.
While the disease poses many problems, the stigma that goes along with epilepsy can be especially challenging. Children and teens with epilepsy often face bullying and isolation from their peers who may not understand the disease. For adults, discrimination is very real in the job market. And all with epilepsy face limitations on their activities, such as not being able to drive until they have been seizure-free for at least six months.
Epilepsy is the fourth most common neurological disorder in the world, behind only migraines, stroke and Alzheimer’s, and is more common than Cerebral Palsy, Parkinson’s Disease and Multiple Sclerosis combined.
A seizure is a brief change in normal brain activity, similar to an electrical storm in the brain. Symptoms, depending on the type of seizure, can range from simple staring spells, to falling, shaking, becoming convulsive and briefly losing awareness of one’s surroundings. Deaths, though rare, do happen, most often caused by SUDEP, or sudden unexpected death of someone from epilepsy, who was otherwise healthy.
Though there is no cure, there is help for those with seizures, ranging from medications to surgery. Two local organizations are here to provide support for those with epilepsy and their families:
Epilepsy Services of SWFL and JoshProvides Epilepsy Assistance Foundation.
Epilepsy Services of SWFL (www.epilepsy-services.org) provides at-risk patients (18 years and older with no insurance or access to regular medical care) with medical, prescription and case management services at little to no cost. JoshProvides (www.joshprovides.org) helps anyone with epilepsy with access to support groups, seizure alert and detection devices, seizure training of a service dog, and help with transportation and medical services. Both organizations offer hope and help for those with epilepsy and their families.
With the support of these organizations, and our community, those afflicted with epilepsy and those who care for them can overcome challenges and stigmas to lead more normal lives.
Andria Bilan
Chief Executive Officer
Epilepsy Assistance Foundation
Barbara Coleman
Executive Director Epilepsy Services of SWFL