Feelings about having Epilepsy
Hi everyone! I have a question regarding for anyone that would like to answer. I have this friend from high school whose son just got diagnosed with having tonic clonic seizures at night and is at high risk for (SUDEP) although if on meds he would be at lower risk. His mother wrote online that she was grieving for him and it made me feel that she was very ignorant about this disease. He is not dying he doesn’t have cancer, if he is on medication they can be controlled and less risk. Also I feel there is a lot that parents assume about Epilepsy and over-react to as well.
While living with Epilepsy how did you feel about it and did you feel that people over-reacted and don’t really understand the disease and are ignorant?
Thank you for your time.
Hi
I am glad you reached out and I hope our community members respond with their experiences with this. I believe our members will say the reality of what it's like to live with this condition can feel deeply misunderstood. I am attaching this article from our patient leaders with their response to this question: https://epilepsydisease.com/living/misunderstood. Understanding and being aware is so important, thank you for starting this conversation. Jill (Team Member) I hope so.
