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Old 11-16-2009, 02:58 AM
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Epilepsy Awareness!

Hello everyone- since it is November and Epilepsy Awareness Month, I thought I would share some basic seizure info to my friends. I never made it uncomfortable or anything- just mentioned some things to them if they asked. Well so far if talked to at 4 other people and some I don't even know (friend's friends) about Epilepsy. Surprisingly one friend named April has a son who is legally blind, was born 4 1/2 months early and had seizures several hours after being born. She started talking to me about blindness and other disabilities when my friend thought I was starting to have a seizure. I told her no, and that I was fine. She asked what type seizures I had- so I shared with her some basic things about Complex partial seizures and she asked lots of good questions about them. Her son has Absence seizures probably- and she wanted to know about medications etc.
She felt really good about talking with another adult about her son's conditions and she was totally open to learning more from my experiences.
Several other opportunities came up to discuss epilepsy and I found that I was able to talk about my own experience with Epilepsy when normally I would worry about how others might think about it. My friend who is blind was not able to see me when I had a seizure- she didn't understand how a person could have a seizure and she not hear it. I told her that if she were able to see my face or see me confused then it would make more sense; so I explained how she could tell & ways to check if everything was okay.

I have always had to be open about my blindness and deafness because both those interfere with communication and mobility- so I am naturally comfortable talking about my disabilities or asking for help or assistance and also having to educate.

Since having complex partials my whole life- I've had to educate my teachers, staff, RI in the dorm, counselors and nurses from blind school to college. So many people don't know enough about Epilepsy and unless someone knows someone, or has a family member with it- they may never know a whole about it. Just like I may not know much about Asthma if it weren't for my friend having it. So I understand the fear/anxiety that comes with not knowing much about a condition.

So last November I put a purple ribbon on my backpack and had people asking about it in school.
I also had a change to lead a class discussion about Epilepsy and seizure disorders in a vocational evaluation class.
I am now attending Epilepsy Support Group meetings and find it extremely helpful to talk with others who have Epilepsy too.

As strange as I thought it would be to discuss Epilepsy with friends or even friend's friends- it has helped me as well to be more open and understanding.

Hope everyone is well,
Crystal and her guide, Umbro
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Old 11-16-2009, 08:18 AM
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Hey Crystal --
It's great that you're spreading word. It's a lot easier to learn about epilepsy from someone you know, than from some abstract source.
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Old 11-16-2009, 07:11 PM
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