What is SE and NORSE?

What is Status Epilepticus (SE)?

Status Epilepticus is a life-threatening neurological emergency: a seizure lasting five minutes or longer, or repeated seizures without full recovery in between. Gavin was found alone in his apartment, unresponsive after nearly three days of severe seizures.

• Convulsive SE — visible full-body convulsions with loss of consciousness; the more common and immediately recognized form

• Non-convulsive SE — no obvious convulsing; the person may appear confused, foggy, or unresponsive, which can delay diagnosis

WHY IT MATTERS FOR GAVIN

Gavin was admitted to intensive care after suffering prolonged seizures consistent with status epilepticus, requiring a medically induced coma and weeks of neuro-critical care before his recovery could begin. These seizures brought Gavin into a hypoglycemic event that caused most of his traumatic brain injury (TBI).

What is New-Onset Refractory Status Epilepticus (NORSE)?

NORSE describes a clinical presentation, not a specific diagnosis: continuous or near-continuous seizures that begin suddenly in a person with no active epilepsy or relevant prior neurologic condition, and that fail to respond to two or more standard rescue medications — with no clear cause found in the first day or two of testing.

• Diagnosis of exclusion — reached only after ruling out stroke, tumor, overdose, and infections such as herpes encephalitis

• Often requires extended ICU care, immunotherapy, and a prolonged recovery with lasting neurological effects

WHY IT MATTERS FOR GAVIN

Gavin's seizures met the NORSE profile: new-onset, treatment-resistant, and without an identified cause — the reason his care required a multi-week ICU stay and transfer to a specialized neurocritical program.

Status Epilepticus (SE)

minutes of continuous seizure activty defines SE

10-60%

reported mortality range across clinical studies

1 : 2,000,000

odds of Gavin's condition/diagnosis

Infinite

Gavin's Love & Gratitude

NORSE

rescue medications fail before SE is called refractory

15-30%

reported mortality range across clinical studies

The Numbers Speak to the Severity of Gavin's Situation: