**Posting this in the event that any readers out there happen to suffer from, or know someone who suffers from, Epilepsy**

Shena Pearson nearly froze in her seat, terrified, as she stared at a power-point slide. She was at her first meeting of an Epilepsy Foundation, seeking help for her 12-year-old son Trysten, when a neurologist flashed the slide about something called Sudep.

It stands for sudden unexpected death in epilepsy. Her son’s neurologist had never mentioned it.

Sudden death in epilepsy is a little-known and seldom-mentioned phenomenon, but now, after a push by advocates, the federal government has begun a concerted program to understand it. Yet a question remains: When, if ever, should patients be warned?

In a way, the extreme reticence of many neurologists to mention sudden unexpected death to epilepsy patients harks back to the days when doctors and families often did not tell people they had cancer — too terrifying. But today, patients learn not just about cancer but about many other potentially fatal conditions, like an inoperable brain aneurysm that could burst at any time and kill a person. So the quiet about the epilepsy death risk appears to be an anomaly.

Neurologists say sudden unexpected death in epilepsy is second to stroke as a cause of years of life lost because of a neurological disorder. Sudep kills an estimated 2,600 people a year in the United States — some neurologists say the real figure is almost certainly higher — or one in 1,000 people with epilepsy. For people whose seizures are not controlled with the medication, the fatality rate is one in 150.

Ms. Pearson’s son was having at least 24 seizures a year despite anti-seizure medication. She could not bear to tell him about the sudden death risk. But he found out anyway three months later. He was meeting with an epilepsy support group meeting near their home in Galveston County in Texas and overheard people discussing it.

A national study of neurologists found that very few always told people with epilepsy about sudden death. That prompted Dr. William Gaillard, the director of the epilepsy program at the Children’s National Health System, to survey the children’s neurologists in his program. Most said they usually did not mention it to families.

“Many of my colleagues, myself included, are paternalistic creatures,” Dr. Gaillard said in an interview. “Many don’t talk about it because it is a low risk, and there is nothing you can do about it. They’ve made that decision for their patients.”

But Dr. Gaillard and others say families have a right to know. In addition, said Dr. Orrin Devinsky, the director of the epilepsy center at NYU Langone Medical Center, knowing about it could provide an impetus for patients to work with doctors to get their seizures under control, as death occurs just after a seizure.

Risk For Sudden Death in Epilepsy That Often Goes Unmentioned