Halloween has come and gone. November is now here, which means fall is coming to a close. When November rolls around, most people’s minds go to Thanksgiving or even Christmas. Most people are unaware that November is Epilepsy Awareness Month. Heck! I didn’t even know until about a year ago! We all go all out during different months to raise awareness for different diseases and different types of cancer, but I never really see anything brought up about epilepsy. Until about 4 years ago, I just thought epilepsy was when strobe lights caused a seizure. Boy, was I wrong.
I was first introduced to the world of epilepsy on my wedding day. Yes, you heard that right. The best day of my life took a pretty horrible turn when I was told during family portraits that one of my bridesmaids was seizing . As I walked to the cabin, where we had been getting ready, I was going down the list of who it may be. No one had any significant health issues as far as I knew. As I started up the stairs, I was told it was my sister. The one person that had never even crossed my mind. She has never had a seizure. Someone must be mistaken.
Nope. Just through the door, I saw my sister. She wasn’t seizing anymore, but she was not fully present. She didn’t know where she was, who I was, or why I was wearing a wedding dress. My heart broke a little. None of us knew what it was that day. Maybe she got overheated, maybe she decided to have a sip of champagne, maybe it was an allergic reaction. None of us even considered epilepsy.
So, in honor of epilepsy awareness month, my sister (so kindly) accepted my invitation to interview her. 4 years of fighting epilepsy. She faced all of her teens (and high school) while fighting this battle. I would have never been able to do it. Yet, she does it with what looks like such ease and acceptance.
In today’s post I am going to share her answers to some of the tough questions I came up with and I am going to add a few facts on epilepsy at the end. Please read. Please share. Please use this as a learning opportunity!
1. What has been your biggest challenge with epilepsy?
“This is going to sound stupid, but that I can’t drive. and that my senior year is going to look a lot different than everyone else’s senior year because I have to be under watch all the time. And staying on top of my meds is hard.”
2.Is there anything you miss that you aren’t allowed to do because of epilepsy?
“I used to have a lot more freedom, but now it’s like every time I am allowed to go out with my friends, I have to bring medicine in case I am out too long. And someone always has to be around me.”
3. What’s you’re biggest motivator? (The thing that keeps you positive)
“My friends. My family. My boyfriend. Just knowing that I have people who love me around me. I have people that see me and don’t just see “seizure girl” when I’m around. I have people that keep me happy and it’s nice. “
4. What’s one thing you would tell someone without epilepsy to help them better understand it ?
” I feel like people think there is just one trigger for it. Because people always talk about it and say, “Don’t look at strobe lights.” And there are more triggers than that. “
“And some people aren’t as open about it. That isn’t all they want to talk about. People need to be more educated. Seeing someone have a seizure can be scary. But people need to learn to take a breath, calm down, and keep calm if they see someone having a seizure. ”
A common misconception about epilepsy is that it is only caused by strobing or flickering lights. In fact an epileptic seizure doesn’t have to have a cause at all. Epilepsy itself usually does have a root cause, but there an many different ways that a person can develop epilepsy. Webmd lists some possible causes of epilepsy, “genetics, trauma during or before delivery, brain trauma, infectious diseases, and developemental disorders.”
Seizures also don’t have to be violent. The mayo clinic says, “Seizure symptoms can vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs.”
The cure to epilepsy has not been discovered yet. Johns Hopkins says, ” There are ways to manage seizures, but there is no cure, so there is always a risk of having a seizure.” Seizures can be prevented through medication and surgery in some cases and usually people grow out of their epilepsy and stop having seizures. But again, none of this is a cure and there is always a risk for anyone with epilepsy to have a seizure.
If you experience someone having a seizure, roll them on their side , place something under their head, do not hold them down , do not put anything in their mouth. Making sure you follow proper precautions during this time can keep them and you safe and unharmed.
Organizations that Raise Money for Epilepsy Research and The Cure:
The Epilepsy Foundation :
Epilepsy. mayoclinic.org. (n.d.). Retrieved November 8, 2021, from https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093.
Hoffman, Matthew. “Causes of Epilepsy.” Webmd.com, 14 Oct. 2021, https://www.webmd.com/epilepsy/guide/epilepsy-causes.
“Medical Management of Epilepsy.” Hopkinsmedicine.org, https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/medical-management-of-epilepsy.
Thanks for reading . I hope this helped you better understand epilepsy. It’s something that has effected my family in so many different ways and I felt the need to use this platform to bring more attention and awareness to it . If you enjoyed this post, share it with your friends and family and I’ll be posting again in 2 weeks!