I have created a non profit 501c3 called Empowering Epilepsy to allow people with epilepsy to take charge of their lives. We currently hold support groups for people with epilepsy, parents of children with epilepsy and coming soon - spouses and children of people with epilepsy. The goal is to let people with epilepsy and their loved ones meet each other and erase the stigma affiliated with seizures. Anyone with epilepsy is a regular, ordinary person.
I came up with the idea because I wanted to help people like me. While I have been seizure free for over 20 years thanks to brain surgery, I remember the struggles, limitations, and learned helplessness that I had experienced growing up with epilepsy. Not being able to drive, losing friends and boyfriends, limiting where I could work and what I could do affected the roads I took in my life for a long time. I always wondered what it would have been like if someone I had known had experienced seizures. Then I realized they did and I just didn't know about it.
One day last summer, I posted a message on Facebook asking - "If you or someone you know has been affected by epilepsy, can you message me? I have a new project idea and would love to talk with them." 39 friends came forward telling me their stories or stories of people they knew. I sent them questionnaires to complete or pass on to the people they knew blindly and ask them to complete them. 26 people completed them and they all said the same things I was thinking - stigmas and limitations with epilepsy affected their entire life. They had the support of their doctors, but outside, they felt alone.
My support groups will provide the realization that they are not alone. They will help answer questions that they have about medications and their side effects, exercise and it's benefits, depression and epilepsy (50% of people w/epilepsy experience it.) and more. My goal is to address any barriers that get in their way of living a normal, successful life.
Funded by Awesome Without Borders (December 2014)