November is Epilepsy Awareness Month. As part of spreading awareness, please enjoy this interview from a pioneer in Epilepsy Awareness, founder of The Epilepsy Network, Tiffany Kairos.
Hello Tiffany. Thank you so much for taking the time to open up to Special Happens readers during such an important month for the Epilepsy Community.
First, would you please share a little bit about who you are and how you’ve become so familiar with epilepsy.
Hi! I’m Tiffany Kairos, Founder of The Epilepsy Network (TEN).
I was introduced to my first seizure at age 16. It was a single seizure discovered to be the result of what’s called a “Cavernous Malformation” or “Hemangioma” in my brain. 6 1/2 years later, my seizures came back. Just 4 months after my wedding. December 11, 2008. As I drove to the store to do Christmas shopping, a seizure struck and I passed out behind the wheel, wrecking into a pine tree. Once at the hospital I was diagnosed as having Epilepsy. I’ve been having seizures ever since.
Prior to your diagnosis, what was your perception of epilepsy?
Prior to my diagnosis, I had zero understanding of what epilepsy was. I only knew what a seizure was and that I’d had one at 16 and another in regards to my car accident. When I was informed that I had “epilepsy”, I felt confused, scared, hopeless. When I was informed of what it was, I began to feel those feelings on a more intense level. Knowing that what my body might do was out of my hands. But I was determined to fight back. Learn all I could and find others like me to help them too.
Is your epilepsy under control now? If so, have you had to endure a number of medication changes / side effects? If not, what are your next steps?
My seizures aren’t fully under control. I sure do wish they could be. I think we all wish they could be.
In the beginning, I was on a roller coaster of medication changes and side effects. As I adjusted to one medicine and its side effects, the medicine would suddenly no longer prevent my seizures. We would increase the amount and have to endure the adjustments and side effects. All while emotionally learning to cope with the realization that I had a condition that will be with me for the rest of my life.
Knowing that you don’t have much control of your own self is sometimes trying but you do the best you can.
However, currently I’m on a level of a combination of 2 medications that have helped me quite well. Not completely but enough that I’m able to work a part time job. My next steps are the steps I’m on. The level of medicine I’m at, healthy eating and exercise. Staying close to God and loving life, friends and family with all of my heart all the days of my life.
What has the reaction been of others around you? People close to you and people who may have witnessed any seizures.
Since my diagnosis, most of my friends have fallen away and disappeared from my life. Only a few true friends of mine have stuck with me.
When I was diagnosed, I willingly said good-bye to things that weren’t good for me. Drinking alcohol, staying up late hours, etc. Those friends, I believe their exit from my life, was a combination of fear of my diagnosis and disinterest in my inability to do those things with them any longer. But my remaining friends and my wonderful family have from the very beginning had such compassion and faith in me that I would overcome. I’ve always told them to never feel bad for me but to help me be strong. That they have done. They’re my rock! I’ve also made MANY more new friends in replacement of those I’ve lost. This diagnosis definitely changed my life. For the BETTER.
[pullquote]Knowing that you don’t have much control of your own self is sometimes trying but you do the best you can. [/pullquote]
What is your desire for the epilepsy community and beyond?
My desire for the epilepsy community and beyond, is to come together in the biggest and grandest of ways. Community is the key word. We need to build bridges globally and uniquely reach out for ways to get this condition on the pedestal that it well deserves.
If anyone can be diagnosed with this condition, it’s critical that we do everything in our power to talk about it, advocate for it and help our fellow brother and sister with epilepsy feel comfortable in their own skin. This is why I’ve made the push for a Google Doodle and to attempt to get it introduced into the NFL.
Can you please tell us a little about The Epilepsy Network.
The Epilepsy Network (TEN) began not long after my diagnosis. A day came where I was tired of feeling scared and alone and I became determined to learn all I could about epilepsy, take my pain and turn it into a journey of uniting others like myself. I wanted to help myself as well as help the world. Together. A network.
You see, when you’re united with others with a similarity to you, the loneliness fear and pain fades away. It makes you feel stronger, braver and happier. I wanted to help people with epilepsy feel this way. As TEN grew, so did my own strength, bravery, and happiness. Knowing I was making a difference in peoples’ lives fueled me to know that this was something I wanted to do for the rest of my life.
Epilepsy went from being my diagnosis to my blessing. (TEN) is a way of saying, I’m not giving up, I’m standing up and I’ll too help you stand! TEN continues to grow in great unique ways and its something I love to be a part of every day. Reaching out to the entire world providing education awareness and unity.
Thank you for this opportunity to tell you all a bit more about myself and The Epilepsy Network (TEN).
Thank you to Tiffany for giving our community insight into her journey of helping others living as she does… with epilepsy every day. To connect with The Epilepsy Network community, please visit the Facebook page. To find out more about how you can help support those living with epilepsy, check out this short video.