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The death of actor Cameron Boyce has brought back a type of epileptic fit in the public consciousness. A sudden and unexpected death related to epilepsy also cost the life of a Mbadachusetts man who is approaching the age of his life.
There was no sign of warning.
Joseph "Joey" Lopez was in college, an athlete, still on the move.
The 22-year-old man was suffering from epilepsy, but he appeared to be under control.
That's why what happened on the morning of January 24, 2014 was such a shock.
Susan Lopez, Joey's mother, was at home in Medford on a Friday morning when she called her son, who was sleeping in his basement bedroom.
There was no answer.
Joey's trusted companion, a rescue dog named "KC", acted strangely. The dog blocked the path to the basement, but Susan Lopez sailed around KC, got out and found her son lying on the bed face down.
"It was shocking. Joey was so normal. It's crazy, "said Lopez, struggling to get the word out. "It's been five years since his death and I'm seeing him again."
According to the death certificate, Joey Lopez died of a sudden death and epileptic (SUDEP), said Susan Lopez.
According to the Epilepsy Foundation of New England (EFNE), a person with epilepsy dies unexpectedly, but was in his usual state of health.
There is no known cause.
The affliction is back in the limelight after the death of actor Cameron Boyce on July 6. Boyce was 20 years old when he was found dead last Saturday in his Los Angeles home. The medical examiner said that Boyce had died of "natural causes". Boyce's family said it was caused by an epileptic seizure.
SUDEP kills more than 1 in 1,000 people with epilepsy each year in the United States. According to Susan Linn, President and CEO of the Epilepsy Foundation New England, the death rate is much higher among people with poorly controlled epilepsy.
In Mbadachusetts, more than 71,000 people have epilepsy and most (over 63,000) are over the age of 18.
People aged 18 to 25 are the most at risk, says Linn, because of risk factors (alcohol, drugs, stress, insufficient sleep) that are common among many young adults juggling their personal, work and academic lives.
Joey Lopez probably corresponds to a way of life that corresponds to these risk factors. He was then working at Suffolk University and was in the middle of a busy week of exams at SUDEP.
He did not take any drugs and rarely drink alcohol, said his mother, but she thinks Joey has had such a busy schedule during the last week of his life that 39, he may have forgotten to take certain doses of his medications for epilepsy.
Lopez was suffering from epileptic seizures, which his mother called "cedillac crises". They can cause loss of consciousness and violent muscular contractions.
According to Dr. Eduardo Garcia, a neurologist at Newton-Wellesley Hospital, having at least three epileptic seizures a year increases the risk of developing a disease in the south-east of the planet. .
As for the cause of PEEDE, there are many theories, said Garcia.
They include respiratory failure after a grand mal seizure. Patients with epilepsy followed in special units experienced "central apnea" after an epileptic seizure, when the lungs stopped breathing.
Brain waves can slow down after a seizure, which reduces the respiratory function.
An abnormal heartbeat is another result of seizures, which can stop the heart.
According to Garcia, there is evidence that drug and alcohol use can lead to SUDEP. Garcia mentioned that cocaine use is linked to a higher risk of epileptic seizures.
Surgery is an option to better control seizures and reduce the chances of PES, according to Garcia, but it is "extremely underutilized". Garcia explained that the reason is that many doctors and neurologists are uncomfortable with the fact that SUDEP is fatal, so it is uncomfortable to talk to patients about it and it 's not advisable. there is no cure.
However, Garcia said that epilepsy surgery has existed since the 1930s and that there is a host of data that show that good candidates who choose surgery have up to 80% of the time. 39, absence of crisis. This is especially true for people with temporal lobe epilepsy, the most common form of affliction.
"It's huge," said Garcia.
Regarding the prevention of SUDEP, increased awareness is an avenue, said Garcia.
Surveillance devices, placed near an epileptic person who sleeps alone, is another. The devices can capture the sound of seizures and alert people who sleep nearby so that they can wake up the person in crisis, which could prevent treatment with SUDEP.
Other technological options include what Garcia called "wearable devices", such as special watches that detect jerky motion following a seizure and send an alert to a nearby person. There is also a carpet under the bed sheets that works the same way. Garcia pointed out that data are lacking on the effectiveness of these technologies.
An electrocardiogram to detect an irregular heartbeat that can cause a seizure is another option.
"(EKG) is not much done, but it should be," Garcia said.
Finally, Garcia stressed that people with epilepsy should take their medications regularly.
"Otherwise you can end up with bad crises," he said.
Susan Lopez knew as soon as she saw her son face down on his bed and turned him over, that he had had a fit.
She is angry that no one has suggested a monitor or mouthguard that her son could have worn while asleep.
"It would have saved my son," said Lopez.
Sitting at her computer at home while conducting a phone interview for this story, at the same place where she sat five years ago, the same morning she found her dead son, brought back the burning pain of Joey's loss.
But Lopez is determined to preserve his son's story, to make the SUDEP better known, so that others can escape his death sentence.
"I am raising awareness because I do not want to dwell on the death of my son. It was a horrible thing, "she said. "I'm doing something good with that."
Henry Schwan is the health reporter for the MetroWest Daily News. Follow Henry on Twitter @henrymetrowest. You can contact him at [email protected] or at 508-626-3964.
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