caret icon Back to all discussions

SUDEP Fear in Epilepsy

A person living with epilepsy may experience serious complications, and the fear of those complications is legitimate and real. We would like to ask the community: Do you fear SUDEP as a possibility within your epilepsy journey?

  1. To answer this questions. Yes I as a caregiver of my niece who has LGS plus a brain injury. Knowing she has seizures during her sleep it is a very scaring thing to know that there is always that possibility of the unwanted. She has had seizures since birth. They have changed over the years. She is only 11 years old. We always prepare but enjoy everyday that the good Lord gives us.

    1. this cannot be easy to navigate through. Thank you so much for responding to this forum and sharing a bit of your daughters story with us. How is she doing? We are here for you throughout this journey - you are not alone. Wishing you all the very best 💜 Warmly, Kailah (Epilepsy Team Member)

Please read our rules before posting.