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The diagnosis and management of epilepsy involves many disciplines, especially neurology, psychiatry, learning disability, general practice, paediatrics, geriatrics, emergency medicine and cardiology. A major challenge is to coordinate all the currently provided services.
Epilepsy incidence is 5 per 10 000 per year. Among patients with suspected “first seizures”, most have syncope, many others have provoked seizures, especially by alcohol.
Epilepsy prevalence is 7.5 per 1000. Among those prescribed antiepileptic drugs (AEDs) for recurrent episodes, 20% do not have epilepsy, most often psychogenic non-epileptic attacks.
DIFFERENCES FROM OTHER CHRONIC CONDITIONS
Public misconceptions. Seizures seen by lay people, in life or on screen, are often the frequent seizures of the severely learning disabled (reinforcing a stereotype), or psychogenic (reinforcing ideas of seizures provoked by emotion), or provoked by flashing lights (not common), or with associated aggression (rare).
Low profile. People with epilepsy often under-achieve having missed education and career opportunities, making them poorly placed to advocate for better services. Those who could make a difference—for example, celebrities in the public eye—almost invariably conceal their condition.
Intermittent disorder. Epilepsy is a background threat rather than an obvious disability with any stigma deriving more from concern about having seizures (felt stigma) than actually having them (enacted stigma).
All ages. Epilepsy affects neonates to the elderly, and generally is long-term; its cumulative lifetime prevalence and morbidity is far greater than comparably prevalent adult-onset chronic neurological disorders such as stroke or multiple sclerosis.
Many conditions. There are many causes and types of epilepsy and many more conditions that resemble epilepsy, so the diagnosis of “blackouts” requires a broad clinical perspective.
No test. There is no one test for epilepsy, despite the public’s and many clinicians’ often misplaced faith in the EEG, and no test for seizure control (unlike diabetes and HbA1c).
No “trial of treatment”. …
Competing interests: The author has received (since 2005) funding for research, teaching and travel from Janssen-Cilag, Pfizer and UCB Pharma.