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"What seems to be happening most of the time is that people stop breathing at the end of the crisis, and they never start breathing again," said Dr. Jacqueline French, chief medical officer at the Epilepsy Foundation and Professor of Neurology at NYU Langone. Health. "Their breathing training is going and never coming back."
The disease "actually takes more lives each year than Sudden Infant Death Syndrome," said Ms. French, "but it's obvious that she does not have the same press".
The term does not include deaths related to external causes, such as drowning or crashing a car during a crisis. Doctors have started to really understand this phenomenon recently, said French, and more doctors are now discussing risk with their patients compared to the past
"More than ten years ago, we did not talk much about epilepsy by the SUDEP, because it scared people." Doctors feared that people would become too scared, especially because that time, we could not do much about it. ", said French.
"But we realized in the last 10 years that it was our responsibility and our duty to talk to people with epilepsy first, because families need to know, and second, because people with epilepsy can do something to reduce their risk. "
Pill cases and follow-ups can help patients with their medications, said Ms. French, but she acknowledged that compliance can be difficult, especially for young people who live independently. "Obviously, every parent's desire is to see their child be independent," she said. "But when they have a health problem, they still worry that independence presents a risk."
Reduce the risk of death
"Fabulous control is not a seizure," she said, "and doctors should not seek convulsion, if patients go to a place where there is no specialized care in the treatment of epilepsy, they should consider using specialized care. "
Further research on drugs that treat the underlying cause of epilepsy, not just symptomatic attacks, could reduce the number of cases of SUDEP, French said. And while patients can take action today to reduce their risk, sudden deaths remain a devastating reality.
Deaths can be particularly painful as many who die seem healthy.
"Every person who treats patients with epilepsy has seen this happen," French said. "It's devastating for us too the doctors."
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