FIRES
What is it? Why do healthy teens like Brielle suddenly get it?
Febrile Infection-Related Epilepsy Syndrome
FIRES (Febrile Infection-Related Epilepsy Syndrome) is a very rare and devastating form of epilepsy that usually begins suddenly in an otherwise healthy child or young adult. It often starts after a mild fever or viral illness, then quickly escalates into uncontrolled seizures, called status epilepticus, that do not respond to typical medications. FIRES requires intensive care, often with medically induced coma, ventilators, and powerful treatments just to keep the brain and body safe.
The outlook for FIRES is challenging. Survivors live with ongoing epilepsy, cognitive and physical difficulties, and the need for lifelong therapies. But every story is different, and recovery can be unpredictable. Research is still limited, which is why awareness and funding (for life saving and brain preserving measures) are so important.
FIRES
Rare & severe epilepsy disorder that affects 1 in a million previously healthy children and young adults.
How it starts
Often follows a mild fever or illness, then escalates into non-stop, life-threatening seizures.
Severity
Seizures are extremely resistant to medications and require ICU care.
Cause
The cause is unknown. The disorder is thought to be due to an overwhelming inflammation in response to a minor infection. However, it's still a mystery and requires further study.
Refractory status epilipticus
Life-threatening neurological persistent seizures despite treatment with two or more anti-seizure drugs. RSE can cause permanent brain damage, and survivors often face long-term cognitive and functional disability.
Prognosis
If patients survive, almost all face lifelong drug resistant epilepsy and cognitive or physical challenges. There is no cure or treatment protocol at this time.
