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by Jodi Shenal
on 26th April, 2024
Purple Day and the Road to Epilepsy Awareness
Posted by Jodi Shenal on 26th March 2024 Additional Needs
Every year, March 26th is designated as Purple Day, a worldwide effort to raise awareness for Epilepsy.
I’m thankful that this cause exists, as it’s a day dedicated to sharing information and standing in solidarity with all individuals living with this diagnosis.
However, wearing purple and posting on social media for one day, out of the entire year, is just a small step in the right direction.
To continue making our communities aware, and to promote further research and treatment options, our little steps must become big strides. To create a difference in the lives of our loved ones living with this monster of a disorder, and their caregivers, we must do more to pave the road to awareness.
I never knew how to respond to a seizure until the night that one happened right in front of my eyes.In a desperate panic, I felt helpless as a tonic-clonic seizure suddenly took over my tiny, 10-month-old baby.
It was out of the blue, as they often are.
No rhyme or reason. Every muscle in her little body contracted violently as she lost consciousness. Her breathing seemed nonexistent.
It was completely devastating, and it changed me forever. The trauma and heartbreak that lasted for only a few minutes was burned into my brain for a lifetime.
They never get easier. No matter how many times you watch your child endure them, seizures are terrifying and gut-wrenching to witness.
As caregivers, we train those in our circles on the protocol to follow if a seizure occurs in our absence. It’s uncomfortable to talk about, but it’s necessary.
It could be lifesaving.
In accordance with the quest to spread awareness, and to teach others how we can walk this road together, these are first aid safety tips provided by the Epilepsy Foundation. Knowledge is power, and it would benefit ALL community members to know what to do if they encounter someone in need of assistance.
- STAY with the person until they are awake and alert (remain calm, time the seizure.)
- Keep the person SAFE (move them away from harm.)
- Turn the person on their SIDE if they are not awake or aware (put something soft under their head, keep the airway clear and loosen tight clothing around their neck.)
- NEVER put anything in their mouth or restrain them.
Call 911 if:
- The seizure lasts longer than 5 minutes
- The person doesn’t return to their usual status
- The person is pregnant, injured or sick
- Repeated seizures or breathing difficulties occur
- Seizure occurs in water
I never hesitate to call for emergency back-up when I feel that it’s needed.
After 13 years of parenting a child with an Epilepsy diagnosis, and living with its looming, stalker-like presence in our home, I wish a cure could ultimately be found. Until then, I will give my all to help her battle this beast.
Parents make the BEST advocates. You’ll find us calling and writing to our legislators.
We share our stories and plead with them to put laws into effect to help our children. I’ve watched incredible parents fight courageously, pushing for bills to legalize medical cannabis and to mandate seizure first aid training in schools.
We have open discussions with doctors on medication side-effects. We strive to educate others so that our kids will be safe, receive better treatment options and maintain the very best quality of life.
On this road to Epilepsy awareness, we can help by recognizing Purple Day and sharing information that we learn with others. We can support families that live this life. Together, we can team up against seizures and help clear the path for those trailing this road behind us.
To learn more, visit www.epilepsy.com and www.purpleday.org
