How epilepsy can affect lives and what one Connecticut lawmaker is trying to do about it

CT Insider – Friday, February 14, 2025
By Cris Villalonga-Vivoni

It’s been more than five years since Robert Robertson’s last seizure. Growing up with epilepsy, Robertson of Niantic said he had to deal with the potential of his sudden and unexpected death for decades.

Diagnosed with epilepsy at age six, Robertson said that while growing up he would experience an average of five seizures a week, ranging from the traditional aggressive convulsive seizures to staring spells. While the number of seizures he experienced has decreased as he got older, there are still side effects that impact his day-to-day life, he said, including having some difficulty communicating and not being able to get a driver’s license.

Although he’s been dealing with a relatively common neurological condition for over 40 years, he said there are some people and providers who may not have the full understanding of what goes on “behind-the-scenes,” living with a seizure disorder and heightened risk of death.

“I hope that I’m able to educate people more about epilepsy and the things that epileptics go through on a case-by-case basis, but enlighten them and open their eyes more to the situations of what an epileptic has to deal with,” Robertson said.

Robertson was diagnosed with epilepsy at six years old and experienced an average of five seizures per week while growing up. Though the seizures have decreased over time, side effects still impact his day-to-day living. Connecticut legislators aim to raise awareness around seizures, specifically sudden unexpected death epilepsy through a proposed bill.

Some Connecticut lawmakers are also hoping to raise awareness and education around seizures — specifically sudden unexpected death resulting from epilepsy — among medical practitioners and patients through a proposed bill submitted by state Sen. Saud Anwar, D-South Windsor.

Sudden unexpected death in epileptic events, also known as SUDEP, is not very common impacting around one in 1,000 adults and one in 4,500 children with epilepsy per year, according to the Epilepsy Foundation, a national nonprofit epilepsy research and education organization.

There are several scenarios where seizures can contribute to death, but SUDEP specifically refers to deaths only attributable to seizures where an autopsy finds no other causes, such as trauma or prior illness, said Dr. John Greenfield Jr., professor and chair of the neurology departments at both the University of Connecticut and UConn Health.

Most SUDEP events occur with a generalized seizure during sleep. According to the U.S. Centers for Disease Control and Prevention, SUDEP can be triggered by breathing problems, abnormal heart rhythms, or other unknown causes. People who suffer from a SUDEP event are often found lying down, in bed and without any apparent signs of having a convulsive seizure.

Greenfield said the best way to lower risk is to control seizures. However, the condition is unpredictable and varies from person-to-person, with some being more receptive to medication than others.

An estimated one in nine people will have a seizure in their lifetime, but Greenfield said not everyone will be treated for epilepsy with medication since providers don’t know the likelihood of having another seizure. He added that medication can help reduce the number of seizures but doesn’t fully control them, and uncontrolled and frequent seizures are one of the main risk factors for SUDEP events.

Learning about the heightened risk of death after being diagnosed with a major neurological condition can be overwhelming for patients. Greenfield said most doctors try to ease patients into learning about SUDEP, its potential risk, and the strategies to reduce the chance of an event. He said they put it in the perspective of “you need to take your seizure medicines because there is this risk.” But that’s not usually the conversation starter, he added.

“We don’t want to terrify people and have them worried that next seizure could be the last, but we want people to do everything they can to keep their seizure disorder under control,” Greenfield said.

Anwar’s proposed bill would amend the state’s general statute to require health care practitioners to provide epilepsy patients and their families with information about SUPED and increase awareness among professionals outside the neurology department. A medical doctor who specializes in lung diseases, Anwar proposed the bill after meeting with a Connecticut mother whose son died from SUDEP, saying it’s a “tragedy” that is more common than people may realize.

He said the bill would help develop educational programming for physicians, clinicians and the community so that people with epilepsy are more aware of their SUDEP risk and establish an emergency plan of action to help.

The proposed bill follows the lead of the New York state legislature, which enacted a law in Nov. 2022 that requires physicians, nurse practitioners and physician assistants to educate patients about SUDEP, Anwar said. As part of the law, the New York Health Department launched a website on SUDEP that outlines the state’s education law, offers resources for medical professionals and provides practical advice, such as establishing healthy life choices and keeping a journal of things that happened before a seizure.

“This is an opportunity for us to make sure that the care providers at all different levels … and all the other people around children with these situations are aware of sudden death and how we can prevent this and also raise awareness in the society about this,” Anwar said.

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