Help for Families who have Lost Someone with Seizures

SUDEP Institute flags at Walk memorial
Community Corner: July 23, 2014
Wednesday, July 23, 2014

This week we were reminded how devastating epilepsy can be. Our thoughts and prayers go out to the family and friends of actress Skye McCole Bartusiak, as well as all those who have lost someone to sudden unexpected death in epilepsy (SUDEP).

Losing a loved one with seizures is so hard, no matter how old they are. Most people don’t realize how serious epilepsy can be. While death from epilepsy is considered rare, it’s more common than you think.

After losing a loved one to epilepsy, grieving takes on an added dimension. Many questions arise about what happened, why, or could it have been prevented?

What help is available for people who have lost a loved one from seizures and epilepsy?

How else can people get involved and help?

  • The North American SUDEP Registry, run by a group of collaborating researchers, is trying to understand the risk factors for SUDEP in people with epilepsy and is looking for ways to predict who may be at high risk. If they can help answer these questions, we may be able to offer ways to prevent SUDEP in the future!
  • For a phone interview to be included in this study, please visit http://sudepregistry.org/ or call (855) 432-8555.

I hope these resources are helpful to people – whether you are grieving now, or are just learning about SUDEP and need to know more. Our thoughts are with you all.

Best wishes,

Patty Osborne Shafer RN, MN
Associate Editor/Community Manager
Epilepsy.com

Authored by: Patricia O. Shafer RN MN on 7/2014

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The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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