It’s not about a color, it’s about educating, bringing people together to help raise awareness and support for a disease that has taken many of our children and loved ones.
Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy’s idea which is now known as the Purple Day for epilepsy campaign. The internationally recognized color for epilepsy which is Lavender so she named it “purple day”
Did you know…
Here are just a few facts from the Epilepsy Foundation http://www.epilepsy.com/connect/forums/living-epilepsy-adults/epilepsy-stats-and-facts:
1 in 10 people will have a seizure in their lifetime.
More than 3 million Americans are affected by Epilespy; that’s more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy and Parkinson’s Disease combined.
In America, Epilepsy is as common as Breast Cancer, and takes as many lives.
Epilepsy affects 50,000,000 people worldwide.
The federal government spends much less on Epilepsy research compared to other diseases, many which affect fewer people.
Research funding for Epilepsy is about $35 per patient compared to $200-$400 for the other illnesses.
Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all Epilepsy related deaths; 85% of these fatalities occur between ages of 20 to 50. SUDEP incidence is approximately 1 in 1000 people with Epilepsy annually more than 10 times the sudden death rate found in the general population.
What can we do?
You can wear purple clothing,
make purple ribbons with your children to wear
and also make bows to tie around trees in your neighborhoods and communities.
Wear purple jewelry,
have a mani/pedi day and get your purple on.
Replace your outdoor light bulbs with purple ones,
release purple balloons in honor of those with Epilepsy and those we have lost to Epilepsy.
It is our responsibility as advocates, parents, caregivers, family members, friends of those with Epilepsy to “Talk About It” to bring Epilepsy into the forefront make it both a household name and word to be used, discussed on an ongoing and continual basis.
Advocacy starts with us, it starts by doing something so simple and watching it spread around the community and globe. Take the time this year to get involved in your own communities and choose to work with an Epilepsy Foundation you feel is truly working for the greater good of the community and its residents. We are all in this together, we are all fighting for the same thing a Cure. Their is no reason that we cannot come together and work together, there is no reason other Epilepsy organizations established or those that are new can not work together and do something to benefit not only both organizations but the communities they live in.
This month Epilepsy Warriors chose one of our portraits of Jackson for their cover photo for their article. This image was taken during a family portrait session at our studio around “Ole Rusty” . Jackson was so adorable, fun and hamming it up for the camera. He was totally a typical 3 year old. It wasn’t until afterwards Mom told us that he had a seizure on back of truck, it was a moment when he was quiet and just kinds stared off and shook a little.
“Epilepsy is an ugly beast ” quote from a loving Mom who is doing everything in her power and praying for wisdom and guidance on raising a precious gift from God!