Help for Families who have Lost Someone with Seizures

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?

• Make sure to notify and ask questions of your medical team. Try to learn more about what happened and what may make it easier to cope with.
• Learn more about death and epilepsy - the most common cause is SUDEP
• Take time to grieve. Losing a loved one is hard for everyone. Remember that epilepsy affects everyone in the family and people may have different feelings and reactions. The SUDEP Institute has a number of resources to help people who are bereaved.
• Visit the Epilepsy Foundation’s SUDEP Institute to learn more about SUDEP and what’s being done in this area.
• Contact your local Epilepsy Foundation for in-person support and information.
• Get involved in epilepsy and seizure awareness activities. Some people have found comfort and a sense of purpose when they honor their loved one by speaking out about 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