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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hello! My name is Karen. My son was diagnosed with epilepsy just over four years ago at the age of eighteen. He is currently unresponsive to medications and is enrolled in a clinical trial called Neuropace. He is unable to attend college or work. He needs someone with him 24/7 due to the frequency and severity of his seizures. We have started to see a decrease in the number of seizures this month - hope it's the start of a good thing!
I am also the Executive Director of South Carolina Advocates For Epilepsy. The Epilepsy Foundation of South Carolina closed back in 2009 and there had not been another organization to support patients and families, until now. We are very new (started in April) but we are growing in numbers every day. We are based in Charleston, but have groups in Greenville and Columbia. It is our goal to increase epilepsy awareness in our state and educate others about seizure first-aid.
Happy to be a part of this forum!
 
Hi SAFE,welcome to CWE!

Sorry to hear about your son, I do hope the Neuropace helps. Let us know what's involved and how things go.

It's great that you're helping advocate for epilepsy in your state. The more resources out there, the better!

Best,
Nakamova
 
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Karen,

Welcome to the forum!

I'm so sorry to hear about your son's severe seizures, but am very happy to hear he is doing better. I'm hoping neurospace will continue to make things improve for him.

And THANK YOU for being such a positive role model in the epilepsy community. It's people like you who are out in the trenches, increasing awareness and building local support networks. I know it makes a huge difference in the lives of the families you touch.
 
welcome to cwe , as everyone else said im sorry to hear about your son , but am glad to hear about your plight to raise awareness , there needs to be more :)
 
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