02/20/2026
Epilepsy touches more lives than many people realize; about 1 in 26 people will be diagnosed in their lifetime. 💜
One of the hardest realities families may face is SUDEP (Sudden Unexpected Death in Epilepsy), which remains the leading cause of epilepsy-related death. Yet many patients and caregivers say they were never told about it.
A recent study in American Academy of Neurology (AAN)'s Neurology Journal interviewed caregivers who lost a child to SUDEP. Many shared the lasting trauma of not knowing the risk. One parent said:
“I would give everything I own to go back in time and have the doctor give that discussion to us.”
Another parent who had been informed shared that simply knowing “saves my sanity even today.”
Awareness doesn’t take away the fear. And it doesn’t prevent every tragedy. But having open, honest conversations can reduce guilt, confusion, and the painful “what ifs.”
As noted by the Epilepsy Foundation of America, some steps may help lower risk, including taking medication as prescribed, understanding seizure safety, and using seizure monitoring tools when appropriate. For some families, seizure monitoring devices like EpiMonitor can provide added support and peace of mind, especially at night.
No family should ever have to experience this kind of loss. By listening, learning, and raising awareness together, we move one step closer to better protection, better conversations, and ultimately, prevention. 💜
Read the article here 👉 https://bit.ly/4cFt2kp