UTICA, NY (WUTR)—In New York State, Sudden Unexpected Death in Epilepsy can now be put on death certificates, thanks to years of local representatives and area residents advocating for legislation.
“I believe that this will be another positive step in the fight against epilepsy,” said New York State Senator, Joseph Griffo.
Governor Cuomo has signed legislation allowing Sudden Unexpected Death in Epilepsy, also known as SUDEP, to be listed as a cause of death on death certificates.
“SUDEP is defined as a death where the person has epilepsy and they can’t determine a cause from the autopsy as to what happened. It’s very similar to Sudden Infant Death Syndrome,” explained Jeanne Donalty.
In 2002, Jeanne and her husband, Judge Barry Donalty, lost their son to SUDEP. They have since made it their mission to spread awareness. With the help of Senator Griffo and Assemblyman Brindisi, the Donalty Family pushed for this new legislation so that SUDEP can be better recorded.
“People will tell you based on retrospective studies, that SUDEP impacts 1 in 1,000 people that have Epilepsy,” stated Donalty.
But for people that cannot control their epilepsy, she said that number increases to 1 in 150 people who die each year from SUDEP. Now that the cause of death can be more widely reported, it can be used by doctors who are studying epilepsy.
“It helps relative to research,” explained Senator Griffo. “When doctors look and see that here was a pretty healthy young man—an athlete who had epilepsy, but all of a sudden had this sudden unexpected death. For them as they clinically research and look into why its taking place and how it happens, [the doctors can ] have an indication as to how many of these are taking place.”
Jeanne Donalty said it is comforting knowing that her son’s story has helped to bring legislation that can ultimately lead to more research so that a cure can one day be found.