Query: Duke is interested in information about New Onset Refractory Status Epilepticus, To date, the etiology is limited to a few cases. Since the disease has only recently been identified, it is highly likely that healthcare providers have seen it, but may have not have diagnosed it as NORSE. Also, you may have observed certain risk factors associated with what is now diagnosed as NORSE. Duke welcomes this information.

Background: New Onset Refractory Status Epilepticus (NORSE) is a relatively new and poorly investigated phenomenon.  Current literature cites minimal manuscripts of patients who succumb to refractory status epilepticus with no identifiable cause or previous history. Patients are typically healthy, young, professionals who present to the hospital with flu-like symptoms and a high fever.  They are often misdiagnosed before the seizures start a week later. This seizure activity transforms into refractory status epilepticus resulting in a lengthy intensive care hospitalization. While trying to suppress the seizure activity, multiple diagnostic tests are performed and the results remain negative.  Although there is some heightened interest in N-methyl-D-aspartate (NMDA) receptor antibodies, this is largely speculative.
 
The Duke experience includes 8 patients from various parts of North Carolina. Interestingly, the first patient was identified as NORSE about 5 years after she expired, only because the term or diagnosis was not existent. Though the literature cites Chinese women, Duke has seen both men and women from various ethnic and racial backgrounds. The family of our first patient states that she was the tenth girl from her area to have seizures suddenly and without reason.  Because the condition is rare, and essentially a diagnosis of exclusion, data (including geographic) are not well linked. Of our 8 patients, we have had 4 survivors, all with either cognitive or physical impairments.

Contact: Melissa V. Moreda at mored001@mc.duke.edu