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Community Forum

In Memory of Susan Nardi

Topic: 

I recently learned of the passing of Susan Nardi from our epilepsy.com community. Many of you may remember her from our early chat rooms - she was a friend and supporter to so many, as she had been in other forums. As I read the Facebook memorial page, I am not surprised to see how many people worldwide she touched with her love, support and friendship. 

On epilepsy.com, she had been known as Aquila. Please feel free to share your memories and thoughts here. A memorial page has also been set up on Facebook at https://www.facebook.com/susan.nardi2?fref=ts.

While we know that epilepsy can be devastating, we often don't talk about people dying from epilepsy. My understanding is that Susan lost her life during or after a seizure. The majority of people are not at risk for dying from epilepsy, but if even one person does (and the true numbers are much more) it's one too many.

Please learn all you can about death in epilepsy. SUDEP, or sudden unexpected death in epilepsy, is the leading cause of death in people with epilepsy but there are other causes too. Visit these 2 links to learn more about this- http://www.epilepsy.com/learn/impact/mortality and http://www.epilepsy.com/get-help/about-sudep-institute. 

While understanding is one part, grieving and coping is the hardest. The SUDEP Institute offers services for people who have lost a loved one from epilepsy. Visit Support for Bereaved for more information - http://www.epilepsy.com/learn/impact/mortality/sudep/support-bereaved. People may also call the Epilepsy Foundation national office at 800-332-1000 and press 1 or email sudep@efa.orgto learn more about our services.

Don't forget your local Epilepsy Foundation affililate too!

Condolences to Susan's family and friends from the Epilepsy Foundation. 

 

Sincerely, 

Patty Osborne Shafer 

(known as epihelp in epilepsy.com chat)

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