Sudden unexpected death in epilepsy (SUDEP) is the leading cause of death in young adults that have epilepsy and uncontrolled seizures. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP, and if seizures are uncontrolled, the risk increases to more than 1 out of 150.
A widespread lack of awareness about epilepsy and the ongoing public fear and misunderstanding about it can lead too many individuals to hide their epilepsy and to accept ongoing seizures, instead of seeking out more effective treatments. The Epilepsy Foundation is determined to change this and is grateful to the families who are willing to share their stories. These stories encourage people with seizures and epilepsy to seek optimal seizure control and to educate themselves and their families about SUDEP and how they can mitigate its risks. They also invite the broader health care community to talk about SUDEP and to pursue all available treatment options with their patients instead of accepting ongoing seizures.
Read the powerful family stories below and contact us if you would like to share your story.
#DareTo Initiate the SUDEP Conversation – It May Save a Life
Our son, John Paul, was a 19-year-old first year student at the University of Virginia. He was academically very bright, an accomplished athlete in swimming (winning the 2015 Virginia state title in the 200 individual medley), possessed an inquisitive mind, had an infectious smile and personality, was modest in his accomplishments, cherished his many friends, and had parents and younger siblings who loved him unconditionally.
This past December, John Paul had just come home from college after exams and was enjoying time with family and friends. Three days after coming home for the holidays, our son passed away in his sleep. It wasn’t until a week after his funeral that I heard for the first time the term “SUDEP” from a relative and began researching more about it online. And through that research, I learned about the many other SUDEP tragedies that have struck innocent families and changed their lives forever, just as it has changed our lives. It seems one common denominator in each of these stories is that the family had never heard of SUDEP and/or their doctor had never mentioned it. Read more about John Paul and his families call to action.
Understanding My Risk for SUDEP
I've spoken about my epilepsy publicly, in many arenas, across the country. I’ve attended several conventions and been invited to camps, schools, and universities relating to athletes, children, parents...
I was diagnosed with Epilepsy after having petit mal (absence) seizures. They progressed to grand mal (generalized tonic-clonic) seizures and were under control with treatment for almost 14 years. One day, without warning, they came back, and I've struggled a little bit ever since. Every 3 months or so. Anytime I'm up a little too late. Or if, God forbid, I forget my medicine.
It is scary, inconvenient, and embarrassing, but the moral of the story is always that I keep going and, in between seizures, I do great. I consider myself happy and successful. I'm very healthy. I follow a low glycemic index diet as part of my treatment, exercise regularly,...
Because of my involvement with Athletes vs Epilepsy, I am well informed when it comes to what SUDEP is. I've heard devastating stories of losing loved ones. To me, stories of people passing in their 40s are just as horrible as losing a 4 year old. But it was never something that could happen to ME. Read more of Chanda’s story and how she came to understand her risk for SUDEP.
#DareTo Attend PAME 2016
In many ways it’s still hard to believe that I lost my 4-year-old son, Henry, to epilepsy nearly 8 years ago. He was a happy, loving, and healthy little boy, full of life and promise. He began having seizures when he was 4 years old. We thought he would out grow them and had no appreciation for their potential devastation.
But before his epilepsy diagnosis was even complete or he had a chance to become therapeutic on his medications, he died unexpectedly during his sleep. Finding him limp, cold, and grey one horrible winter morning and doing CPR, in vain, on my first-born child is still too surreal to really imagine. Read more of Henry's story, how Gardiner turned grief into action and about the Partners Against Mortality in Epilepsy (PAME) Conference.
#DareTo Say SUDEP and Make Informed Choices
My name is Kristan Bagley Jones and our journey with epilepsy began in 2009 when my son Evan was 15. I learned a great deal about epilepsy as Evan suffered through nine grand mal seizures over four years, but never about SUDEP (sudden unexpected death in epilepsy) from any of his doctors.
I first learned about SUDEP after his funeral through friends. I do not know why I did not learn about SUDEP from his doctors, all of whom had provided a great deal of compassionate and expert care. Read more of Evan's story and why she wants people to #DareTo Say SUDEP and make informed choices.
#DareTo Say NORSE
I thought the word NORSE related to Vikings, not a seizure disorder. So I was in disbelief when a doctor proposed that our son’s continuous cascade of seizures was due to NORSE or new-onset refractory status epilepticus.
NORSE is defined as an acute, prolonged crisis in which one epilepsy seizure follows another without recovery of consciousness and with no known cause for these seizures. Daniel had no history of seizures, and there was no history of epilepsy in the family. Even the word epilepsy was unfamiliar to me. Read more about Daniel's story and why Nora wants more families and doctors to #DareTo Say NORSE.
#DareTo Be SUDEP Savvy
I hope my #DareTo Say SUDEP story will encourage as many people as possible to support SUDEP Awareness Day on 23rd October.
My partner Alan was 27 when he died in 1990. We had lived with epilepsy for only seven months before he died suddenly one night. In the months before he died we struggled to manage. We had been told there was nothing to worry about and that if Alan had a seizure, I should put a spoon in his mouth. These two bits of advice were both wrong. Read more about Jane's journey for SUDEP Action and SUDEP Awareness Day.
#DareTo Contact the Epilepsy Foundation and the North American SUDEP Registry
My name is Anne Render, and I would like to tell you about my son, Ian. Sunday, November 9, 2014, began as a wonderful day. My first grandchild had been born three days before, and I was in Chicago sharing this special time with my daughter and son-in-law. The day ended in the worst possible way – I learned that my 24-year-old son had died of SUDEP. Ian developed temporal lobe complex partial epilepsyat the age of 11. He quickly became seizure free on medication. Epilepsy did not alter life much for Ian. He knew not to swim alone, and his family and friends knew what to do in case a seizure occurred. Read more of Anne Render's storty and why she wants people living with epilepsy to #DareTo Contact the Epilepsy Foundation and North American SUDEP Registry.
Mom and Nurse: #DareTo Advocate for Adults Living with Epilepsy
Dear Parents of Adults Living with Epilepsy,
My story is about a family that fought to help their son, John, get his seizures under control. John began having seizures when he was 18 years old. We never found the cause of his seizures. At first, John only had absence seizures. He loved rap music and sometimes he would just start rapping but it didn’t make sense – we then realized he was having a seizure. Then his seizures got worse and he started having convulsive seizures. The seizures were relentless. He became irritable and his personality changed. We struggled and didn’t know what to do. Read more of Lizabeth Carmichael's story and why she believes parents need to know about all the resources available and be advocates for their adult children with epilepsy.
#DareTo Say SUDEP: A Daughter’s Perspective
My father, Kevin Smith, had epilepsy since he was a child. Apparently he had fallen down a few flights of stairs as a small boy and had developed seizures from the fall. He had been put on many medications, but nothing he took completely controlled his condition. He passed away January 31, 2014 . He was only 56 years old. Read more of Amber Brazda's story and learn why she believes people with epilepsy need to talk about SUDEP.
One Family Dares Doctors to Talk About SUDEP
Dear Health Care Professional,
The care and information you provide people with epilepsy is critical. As a doctor, you are viewed as the most reliable source of information on epilepsy. We want to share our story with you, in the hopes that it will give you a perspective on why it is important to discuss the risk of Sudden Unexpected Death in Epilepsy, SUDEP, in conversations you have with your patients. Read more of the Nowotenski’s letter honoring their son and daring doctors to talk about SUDEP.
A Plea from a Family: Talk about SUDEP
To Whom It May Concern:
My name is Kellie Jankowski and I am the mother of Dakota. Dakota was a bright, young, beautiful 16-year old girl who happened to have epilepsy. She is the hero in this letter; she is helping me to help many others due to her circumstances. Because of Dakota, I would like you to please take a moment out of your day to read this. Read more of Kellie Jankowski’s #DareTo Say SUDEP letter in memory of her daughter Dakota.
Mom to Young Adults: #DareTo Ask for Help in Managing Seizures
My 23-year-old daughter, Heather Schoonover, passed away on February 5, 2015. She had epilepsy since she was 11 years old. She had her seizures pretty well controlled through her school years, but when she went to college, her seizures became more and more of a problem. Heather’s seizures were brought on by lack of sleep, stress, and not taking her medication. She knew she needed to take control of the problem, but she was too proud to ask for help. Read more of Kristy Flack's story and why it is important to encourages teens and young adults to ask for help in managing epilepsy and seizures.
Epilepsy Patients Need More than Pot
"In CNN's 'Weed' series, Dr. Sanjay Gupta called for a 'marijuana revolution' to help patients who are suffering from pain, seizures, and other serious medical conditions. As a mother of a daughter with Aicardi syndrome, a very rare disorder that causes hard-to-control seizures and significant physical and cognitive disabilities, I couldn't agree more.
"These days, it's almost commonplace to learn of successful efforts by parents of children with epilepsy to gain access to medical marijuana for their kids. I have been part of that effort, and I am struck by how dramatically this campaign has highlighted what it's like to live with unremitting seizures.
"But there's a more devastating threat for people with epilepsy. It's largely unknown, despite its prevalence: Sudden Unexpected Death in Epilepsy (SUDEP)."
Omissions Can Be Deadly
I am every parent’s worst nightmare. My child died. I am the reality that no parent wants to face. I'd love to be writing, "A Mother's Story," that finishes with a happy ending. This one, like so many, ended in tragedy.
We in the medical profession could fill volumes with tragic stories. This one is different, because it is mine. It is a tragedy of omission. It is the tragedy of silence. It is the tragedy of passivity. The course of events have forever changed my life. Read more of Linda Coughlin Brooks' story about Carei and how withholding information about SUDEP helps no one.