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EFCO Ambassador Delaney's Story

Hi, I’m Delaney.

Did you know that the Institute of Medicine recently released a report (March 2012) that states one in twenty-six people will be diagnosed with epilepsy at some point in their lifetime? I am part of that statistic.

I was fourteen years old when I was diagnosed with epilepsy. My epilepsy evolved from absence (lapse in attention) seizures to including tonic-clonic (convulsing) seizures. My first tonic-clonic seizure took place in class. I never feared my epilepsy or felt lost or overwhelmed until this experience. My tonic-clonic seizure knocked me out, and when I regained consciousness, I felt like a whole new monster had entered my life. My seizures began to take a toll on my life, both socially and emotionally. The struggle to try to get my epilepsy under control with the combinations of failing medications took me away from the everyday life of being a teenager.

I first found the Epilepsy Foundation of Colorado (EFCO) at their Strides for Epilepsy 5K. I was deeply affected by seeing so many people gathered to support individuals with epilepsy. I felt my attitude towards epilepsy start to change. It led me to attending EFCO’s Jason Fleishman Summer Camp. The camp fulfilled a need I didn’t fully realize I needed by giving me a support group of friends that have epilepsy too. Since my first experience at camp, I chose to get involved with EFCO’s youth council in an effort to be more connected and help others with epilepsy find support like I did.

The memory of how overwhelmed and alone I felt when I first began to have multiple tonic-clonic seizures moves me to help others when they are diagnosed with epilepsy. Project Backpack, which supplies backpacks of helpful information to newly diagnosed children, has become one of my passions. The backpacks are supplied with information on epilepsy and how to get in touch with EFCO. It also has the profiles and pictures of those of us on Youth Council because we want to let other kids know that they aren’t alone. We’re here for them and they will be okay.

As part of Project Backpack, I’ve volunteered at Children’s Hospital Colorado in the neurology clinic to hand out backpacks to newly diagnosed children. This experience is particularly rewarding because I know what it means to realize I’m not alone. I also speak on panels around town because I believe as a member of the youth council and someone living epilepsy, it is important to educate the public. The confidence I have to heighten awareness and cast out stigma about epilepsy comes from the support that EFCO gives me. Their support changed my journey. I now have a positive perspective and know that, while it’s a part of me, epilepsy does not define me.

If you have epilepsy, contact EFCO and find support like I did – it will change your life!

If you would like more information on how to be more involved with the Foundation, I encourage you to visit www.epilepsycolorado.org. If you’re able, please help support the programs at EFCO because they change lives for the better. Make a donation or volunteer your time and make a difference. Think about how many people you know, and how one in twenty-six of them have epilepsy like I do. When you consider that, you’ll see that epilepsy touches all of us. So don’t just sit still, especially during November, which is Epilepsy Awareness Month – please get involved!

Thank you,
Delaney

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