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Advocacy for Epilepsy and other Neurological disorders

Wed, 06/11/2008 - 08:50

This is directed to all but mostly to those that are running information and advocacy groups for those of us with epilepsy like epilepsy.com, epilepsy foundation, and others. I have been asked and have gone to volunteer to be an advocate for the Epilepsy Foundation here in my state but after speaking with them, have decided not to because in the end I felt as though I was going to be treated as victim instead of the strong survivor and independent person I have become. I want to help, but I am not a victim. I am a domestic violence survivor too but I never once considered myself a victim.

Let me advocate, but I don't want to use my story to create this victim status for all of those with epilepsy. I want to empower all of us to demand better quality of life, better research, and better community support. Don't feel sorry for me. I am not an epileptic. I am Laurie, a mom, a wife, a strong women, intelligent, that just happens to have epilepsy.

Thank you for listening to my frustrations. I feel many of us have a lot to give, if we were not seen as this pathetic medical experiment.

 

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