Seizure Survey results from our PNES website: Over the last many months, we have asked the visitors to www.nonepilepticseizures.com to tell us: How do they prefer their seizures be called?
Seizure Survey: For this issue, we are also publishing the responses to our survey in www.nonepilpeticseizures.com. Visitors were asked the following question: what name do you prefer be used when discussing your seizure condition?
The reason that this question was asked is because in recent years there has been a lot of back and forth in some professional groups and in some patient groups/foundations questioning the best way to call “psychogenic non-epileptic seizures” (PNES). Proponents of a change state that they want the name changed because sometimes patients are mistreated; they suspect this might have something to do with the term “psychogenic” because of the stigma associated with anything psychological. So, they propose that it would be preferable to use a term that obscures the psychological features in this condition. They believe that if the name is changed to something like “functional seizures” that emergency medical professionals, clinicians and maybe even the public will start to treat patients differently.
Among the many new names that are being proposed, mainly in some professional circles we find: non-epileptic attack disorder (NEAD), dissociative seizures, functional seizures (FS), and functional dissociative seizures (FDS). So, this is why we asked visitors (many of our visitors are patients or caregivers) to www.nonepilepticseizures.com what name they prefer be used. Results indicate that most (almost half) stated that they prefer PNES. Slightly less than a third chose FS, and a much smaller percentage preferred dissociative seizures or stress seizures. So, this gives us food for thought and suggests that the push for changing PNES for something else (after it has earned quite a bit of name recognition after years of educating health professionals) may not have the support from the PNES community that some claim it does.
What is your preferred name for your condition?
These are the most recent survey results: 414 votes
Functional seizures: 28%
Psychogenic non-epileptic seizures: 49%
Dissociative seizures: 14%
Stress seizures: 9%
