The coining of the word EPILEPTOLOGIST most certainly dates to at least the turn of the century. Spratling was North America's first Epileptologist, [see Dasheiff, RM, The First American Epileptologists: William P. Spratling, MD, and Roswell Park, MD Neurology 1994;44:171-174.] Spratling used the term epileptologist to describe himself and others who specialized in epilepsy in his book: Epilepsy and its treatment. Phila. WB Saunders, 1904. Others picked up on this term as evidenced by L. Pierce Clark's chapter "A Suggestion to Epileptologists" found in Transactions of the National Association for the Study of Epilepsy and the Care and Treatment of Epileptics. Vol. IV. Ed. W.P. Spratling, Sixth annual meeting, New Haven, Conn. November 8, 1906l pp.204-212
Nevertheless, epilepsy as a specialty did not enjoy widespread visibility until after World War II. The invention of the EEG, modern Neurosurgical practices, and substantive clinical and basic research helped the field develop. The Veterans Administration spearheaded the movement by establishing Epilepsy Centers in the 1970's launching a new breed of Neurologist's who began to specialize in the treatment and research of epilepsy.
The Epileptologist practices in four areas:
The quintessential EPILEPTOLOGIST is a physician who is Board Certified in Neurology (or Pediatric Neurology, or Neurosurgery), Board Certified in EEG (Clinical Neurophysiology), had Fellowship training at an Academic Epilepsy Center, had Postdoctoral training in Basic Research. This physician may or may not additionally have a higher degree (e.g. Masters, Ph.D.). S/He usually belongs to a number of Academic Societies: American Epilepsy Society(AES), American Clinical Neurophysiology Society (ACNS) [formally Am. EEG Soc.], American Academy of Neurology (AAN), Child Neurology Society (CNS), Epilepsy Foundation of America(EFA), Society for Neuroscience (SN), American Association for the Advancement of Science(AAAS).
The Epileptologist predominantly sees patients with epilepsy, seizures, and spells (the three are different) at a program which has multidisciplinary support (outpatient, inpatient; medical, surgical, experimental treatments; psychology, psychiatry; social; nursing; pharmacy).
In addition to patient care, an Epileptologist must concurrently be engaged in Research. [ NIH Homepage, Nat'l Inst. Neurological Disease and Stroke ] The research may be either clinical e.g. antiepileptic drug studies, epidemiology, surgical, etc.; or basic e.g. anatomic, biochemical, computer modeling, EEG, genetic, etc.
The Epileptologist teaches others in the Health field (medical students, Neurology residents, Epilepsy Fellows, nurses, pharmacists, etc.) as well as researchers in training (predoctoral, postdoctoral).
Finally, an Epileptologist is concerned about the non-medical issues of Epilepsy (social injustice, driving regulations, access to employment and healthcare, quality of life). He may pursue this through local and/or national organizations such as EFA.
As the field of Epilepsy grew, Basic Research scientists became involved not only with epilepsy research, but with the broader aspects of teaching and public service. Although excluded from direct patient care as non-physicians, they nevertheless embodied the full ideal of an Epileptologist.
In the 1980's, the concept of EPILEPTOLOGIST was embraced by clinical researchers and nurses, the later forming their own Neuroscience Nursing Society.
More and more medical and non-medical professions began to use the term in association with persons who wished to emphasize their subspecialty of expertise. However, just as there are seizures and pseudoseizures, there are pseudo-epileptologists. These are people in both the medical and non-medical professions who lack much of the training and expertise described above. Since imitation is a form of flattery, the field of Epilepsy is justified in saying it has now matured and flourished into a major force within the medical community.
Despite the fact that Epilepsy affects just as many people as Diabetes, it is an illness which isin the closet. An unpopular illness with great social stigma. Neurology as a whole is a small specialty, and the trends in healthcare further decrease referrals to Neurologist from Primary Care Providers. HOW DO EPILEPSY PATIENTS GET TO AN EPILEPTOLOGIST? Most don't!
Most are treated by Family Practitioners, General Practitioners, Internists, Pediatricians. Most benefit from community standard medicine. For patients which appear to be more difficult to manage, referrals are made to Neurologists or Neurosurgeons for another level of care. Finally, the highest level of expertise is the Epileptologist. These 100 individuals spread throughout the United States couldn't possible handle all 4 million people with epilepsy. They are usually very busy seeing medically intractable patients, patients with difficult to diagnose spells, pseudoseizures, and epilepsy surgical candidates. However, if a patient doesn't think he or she is getting what is listed in the epilepsy BILL OF RIGHTS, they can ask for a referral.