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Irish and Lucky: an anonymous epilepsy story of hope

cc By Cygnus921, via Wikimedia Commons

The following epilepsy story was sent in anonymously. This person, after 48 years of living with epilepsy, has found a way to see a glimmer of hope. Check out this story.

Hi, all! I am a lifelong epileptic, having been diagnosed as a child at the age of 7. I did not have a pre-seizure event of any kind. By that I mean, there was no accident or infection. But I had a grand mal seizure, anyway. Later, I was also diagnosed with absence seizures.

I am lucky and blessed to say that my grand mal seizures have been very well treated with Depakote over the years. It was a new drug when I began taking it around 1976! So I have had only 6 or so seizures in my 48 diagnosed years. This year (2013) I saw an epileptologist and he saw the need for a second drug to combat the absence seizures I was still having. They are invisible to anyone, even good friends and do not seem to interfere with what I am doing. We’re working on how to best treat them now.

I find it hard to explain to people that a disorder they cannot see evidence of, an invisible one so to speak, affects me. I am a creative sort and I’ve written a short play about my first 12 years with seizures. I was able to start driving a few years after starting the depakote. I have recently retired (early!) from my corporate day job and I am hoping to make a dent in the misinformation and stigma that still surrounds this disorder!

Just say no to spoons!

author avatar
Jessica K. Smith Founder and CEO; Executive Director
Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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