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My Brother Died a week ago of Epilepsy

Sun, 06/16/2019 - 05:02
My brother died about a week ago of epilepsy , we didn't even know about SUDEP till it took his life away, we never knew there was even a small chance of this happening, no doctors told us this, my parents are shattered and broken beyond repair, I don't want to live anymore either, I am just here for the sake of my parents, I still cannot believe he's gone , my heart feels sick.. I am so angry at God for doing this to my angel..he was the purest soul, he shifted to US from India and it was just his second year in the US, he was so kind and helpful that the funeral home was filled with 300 people and there wasn't a dry eye.. I am still in denial and I feel that God will realize what a mistake taking him away was and will send him back to us.. I don't know what to do..i never felt so helpless my entire life..i want my brother back.. Does SUDEP hurt, we were told his heart stopped due to the seizure.. He was healthy and was managing his epilepsy so well off late..he was finally happy.. I really hope he didn't suffer when he died..please let me know


I am sorry for your loss.

Submitted by Anonymous on Mon, 2019-06-17 - 11:42
I am sorry for your loss. Unfortunately SUDEP happens is more common than we think. But when people don't talk about it, it's even harder to cope with. Through the Epilepsy Foundation's SUDEP Institute we have a bereavement counselor. She and our Director are available to talk to you and your family. Please call our 24/7 HelpLine and tell them you'd like to speak to the SUPEP counselor. will also share this post with them. We have a closed group for families who have lost someone to SUDEP and you may find this helpful. My sympathies, Epihelp

I am so extremely sorry for

Submitted by SUDEP Director on Mon, 2019-06-17 - 12:07
I am so extremely sorry for your loss.  At times like this there aren't any words that can take away the pain and the hole in your heart that you feel.  However, with support, like we have at the SUDEP Institute, we can help listen and fully understand.    I speak from the Director of the program, I lost my own daughter to SUDEP 5 years ago. As mentioned below we have the closed group to chat with other folks who have lost  - there are siblings in the group who understand and can support you as well.  Please reach out to us - let us know how we can help you.  We WANT to help you and we understand.  The helpline is available or you can email at  I'm sorry for this loss and we can't bring your brother back but please know we are here to help you weather the grief journey moving forward.Sally SchaefferSr. Director, SUDEP Institute 

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