Governor Cuomo has now signed legislation allowing Sudden Unexpected Death in Epilepsy, or SUDEP, to be listed as a cause of death on death certificates.
For people like Randy Havens, who has lived with epilepsy his entire life, it’s a move in the right direction.
“It was literally minutes after I was first born that I had my first seizure,” Havens said.
Havens says it continued throughout his childhood and would happen randomly every few months.
He’s much better now, but he recalls his mom’s stories of walking into his room to check on him during the night.
“When I was an infant, she said if I had one, I’d have three, so she’d wait until the third one was done,” Havens said.
The unknown of the disease is what has prompted many in their shoes to push for more education on what epilepsy is and SUDEP.
“Sudden Unexpected Death in Epilepsy is an unknown thing that happens with a person who has seizures,” Michael Radell said.
Radell is the education coordinator for Epilepsy-Pralid, Inc. and says Governor Cuomo signing legislation allowing SUDEP to be listed on death certificates will help.
“If we can take steps to identify who has a fatality due to seizures, then we can go and do some preventative measures to try to avoid that happening to other families,” he explained.
Tammy Johannes said she was heartbroken when her daughter Tanya passed away from SUDEP and it wasn’t recognized.
“When my daughter passed away, the medical examiners officer had never heard of SUDEP,” she said.
Johannes said she didn’t know about it, either and that’s why she hopes with the legislation, change will come.
“That conversation never took place. I did not know that and that’s why this SUDEP is such a crucial thing for death certificates.”
For a link to a Tanya’s Trot For Epilepsy, which raises money for SUDEP awareness, click here.