The Elephant in the Room: Talking Honestly About SUDEP - November 2025

By Drew Thodeson, MD with Leigh Goldie, Empowering Epilepsy
Epilepsy Awareness Month, November 2025

There are conversations we glide into with ease. Then there are the conversations we circle, postpone, or hope someone else will handle. SUDEP — Sudden Unexpected Death in Epilepsy — has too often lived in that second category.

During November, Epilepsy Awareness Month, we are challenged to bring tough conversations about epilepsy to the forefront. Months ago, Empowering Epilepsy and MBBN Research embarked on a project to do just this: to bring SUDEP out of the shadows and into the open. Not to scare people. Not to sensationalize. But to do what saves lives: talk honestly, compassionately, and clearly about what SUDEP is, what it isn’t, and what families and clinicians can do together.

SUDEP is the elephant in the room. It’s time we name it — and make space for hope, knowledge, and action.

What We Know

SUDEP is not as rare as the medical system has traditionally described it.

The commonly repeated statistic — “one in a thousand people with epilepsy” — is technically accurate if you average every type of epilepsy together, from the mildest to the most severe. But averages hide reality. In people with drug-resistant epilepsy, especially those with frequent generalized tonic-clonic seizures, SUDEP rates rise dramatically — up to 1 in 150 per year. And SUDEP remains one of the leading causes of death in people with epilepsy.

So no, “rare” isn’t the right word. “Under-discussed” is far more honest. The good news? We know what lowers risk.

A major New England Journal of Medicine review and subsequent studies make this abundantly clear:

• Controlling generalized tonic-clonic seizures is the single strongest protective factor.

• Medication adherence is critical — and missing doses increases SUDEP risk up to eightfold.

• Nighttime monitoring – not sleeping alone and/or using monitoring devices such as cameras and sleep recording devices – decreases the possibility of unwitnessed seizures and reduces risk.

• Reducing seizure triggers, addressing stress, sleep deprivation, substance use, and missed medications all matter.

• Collaborative care — open, engaged communication between families and clinicians — creates the safest possible conditions.

We also know what doesn’t help: Silence. Avoidance. Pretending SUDEP isn’t real because it’s uncomfortable. Knowledge is protective. Avoidance is not.

What We Feel

If the science of SUDEP is clear, the experience of SUDEP — the emotional weight, the lived stories, the fear, the resilience — is something entirely different.

This year, our team (two individuals with lived experience of epilepsy, an epileptologist, and a medical student) sat together for a series of structured conversations to explore what SUDEP means to each of us. After the first discussion, I was stuck at the depth of the emotional context, the words that spilled out without hesitation:

Understanding.
Best care.
Opportunity.

Fear.
Unpredictability.
Loss.
Knowledge.
Love.
“Will I die too?”
“Why didn’t anyone tell us sooner?”
Community.
Empathy.

There is an entire emotional universe living behind those words.

Families often tell Leigh that the first time they ever hear the word SUDEP is after a tragedy — as if it was something relegated to the shadows, something whispered backstage rather than spoken plainly in the exam room. That is not good medicine. It is not good advocacy. And it certainly is not good community.

Too often in my medical practice, I have experienced that epileptologists and neurologists bring up SUDEP only when talking with people who are struggling to take medications. It is used to “scare” people into taking their medications. Medications that all too often have side effects and make people feel apart from rather than a part of.

However, talking about SUDEP should not be about scaring families. It’s about respecting them enough to tell the truth.

When Leigh shares stories from the Empowering Epilepsy community, the feeling that rises to the top is not fear — it’s connection. The moment people realize they are not alone, something tight in the chest unclenches. What was once terrifying becomes manageable. What was once obscure becomes understandable. What was once unspeakable becomes shared.

And when a physician approaches the conversation with honesty and compassion — not clinical detachment, not rushed statistics, but real human presence — families gain something priceless: understanding.

What We Can Do

This is where the science and the human stories meet. From our “Three Conversations about SUDEP” project, one theme rose above all the others: “Listen. Don’t lecture.”

People with epilepsy and their families want information. They want clarity. They want honesty. But above all, they want someone who sees them — not as a statistic, but as a human being navigating an unpredictable illness.

Here’s what we can all do:

For clinicians

• Bring up SUDEP proactively, early, and without fear.

• Invite questions — especially the uncomfortable ones.

• Emphasize individualized risk, not blanket statements.

• Check adherence, barriers, side effects, and social determinants that make seizure control harder.

• Talk about nighttime safety.

For people with epilepsy and families

• Ask about your personalized SUDEP risk — you deserve an answer.

• Never hesitate to discuss medication challenges, side effects, or barriers to access.

• Build a seizure safety plan with your clinician.

• Join community groups like Empowering Epilepsy and PAME — community is oxygen.

For advocates, researchers, and organizations

• Share SUDEP education year-round, not just in November.

• Build programs that honor lived experience.

• Fund studies that bring us closer to prevention and better treatments.

• Make space for stories — they’re data of the heart.

Every informed conversation reduces risk. Every open dialogue breaks stigma. Every shared story builds a safer world.

Living Fully by Knowing Fully

Talking about SUDEP isn’t about planting fear. It’s about planting clarity. It’s about helping families live their fullest lives with epilepsy while understanding the real risks, the real protections, and the real hope that comes with knowledge.

Empowering Epilepsy and MBBN Research will continue this work throughout Epilepsy Awareness Month — and beyond. We hope that by embarking on our project, “Three Conversations about SUDEP: Medicine, Humanism, and Real-World Impact,” that we can invite our colleagues to join the movement toward more honest, compassionate communication.

Because the truth is simple: When we talk openly, we heal openly. And no one should face epilepsy alone.

Visit Empowering Epilepsy to get involved: www.empoweringepilepsy.org/

Selected References

- Devinsky O. Sudden, unexpected death in epilepsy. N Engl J Med. 2011 Nov 10;365(19):1801-11. doi: 10.1056/NEJMra1010481. Erratum in: N Engl J Med. 2011 Dec 22;365(25):2441. PMID: 22070477.

- Tomson T, Andersson T, Carlsson S, Sveinsson O. Influence of Risk Factor Combinations on Incidence Rates of SUDEP: A Population-Based Study. Neurology. 2025 Mar 11;104(5):e213372. doi: 10.1212/WNL.0000000000213372. Epub 2025 Feb 5. PMID: 39908470.