Epilepsy: Just the Facts
About Epilepsy
Lack
of knowledge about proper seizure first aid exposes affected individuals to
injury from unnecessary restraint and from objects needlessly forced into their
mouths.[1]
Of
major chronic medical conditions, epilepsy is among the least understood, even
though one in three adults knows someone with the disorder.[2]
Epilepsy
is not a single entity, but a family of more than 40 syndromes[3] that
affects more than 3 million people in the
Prevalence
Epilepsy
is the third most common neurological disorder in the
This
year another 200,000 people in the
Thirty
to 40 percent of people with epilepsy are severely affected and continue to
have seizures despite treatment.[9]
Cost
Epilepsy
imposes an annual economic burden of $15.5 billion[10] on
the nation in associated health care costs and losses in employment, wages and
productivity.
Epilepsy
and its treatment produce a health-related quality of life—measured in days of
activity limitation, pain, depression, anxiety, reduced vitality and
insufficient sleep or rest—similar to arthritis, heart problems, diabetes and
cancer.[11]
Age of Onset
Epilepsy
strikes most often among the very young and the very old, although anyone can
get it at any age. In the
The
number of cases in the elderly is beginning to soar as the baby boom generation
approaches retirement age. Currently more than 570,000 adults age 65 and above
in the
Epilepsy and Death
The
mortality rate among people with epilepsy is two to three times higher—and the
risk of sudden death is 24 times greater—than that of the general population.[14]
This
year an estimated 25,000 to 50,000 will die of seizures and related causes,
including status epilepticus (non-stop seizures), sudden unexpected death in
epilepsy (SUDEP), drowning and other accidents.[15]
Stigma
The
leading non-medical problem confronting people with epilepsy is discrimination
in education, employment and social acceptance.[16]
Some
people with epilepsy do not even know they have it because they’ve been told
they have a seizure disorder instead. This unfortunate euphemism arose because
of the stigma associated with epilepsy, a stigma that the
Diagnosis and Treatment
On
average, it is 14 years between the onset of epilepsy and surgical intervention
for seizures uncontrollable by medication. American physicians may be unaware
of the safety and efficacy of epilepsy surgery, making it among the most
underutilized of proven, effective therapeutic interventions in the field of
medicine.[18]
Lack
of knowledge about proper seizure first aid exposes affected individuals to
injury from unnecessary restraint and from objects needlessly forced into their
mouths.[19]
Co-Morbidity
Epilepsy
is prevalent among those with other disabilities, such as autism (25.5 percent),
cerebral palsy (13 percent), Down’s syndrome (13.6 percent), and mental retardation
(25.5 percent)—while 40 percent of people who have both cerebral palsy and
mental retardation also have epilepsy.[20]
The
association between epilepsy and depression is especially strong. More than one
of every three persons with epilepsy are also affected by the mood disorder,
and people with a history of depression are 3 to 7 times more likely to develop
epilepsy than the average person.[21]
[1] Repeated
surveys by the
[2] Kobau R, Price
P. Knowledge of Epilepsy and Familiarity with This Disorder in the
[3] NINDS epilepsy
information web page.
[4] Projection
based on Begley, CE, et al. The Cost of Epilepsy in the
[5] From World
Health Organization and Out of the Shadows
campaign.
[6] Hauser, A.
Epidemiology of seizures and epilepsy in the elderly In: Rowan A, Ramsay R,
eds. Seizures and epilepsy in the elderly.
[7] Cerebral palsy
(764,000), multiple sclerosis (350,000–500,000), Parkinson’s disease (1.5
million) equal 2,614,000–2,764,000.
[8] See note 4
above.
[9] The prevalence
of intractable epilepsy ranges from less than 25 percent to over 44 percent
dependant on the source. (A figure of 44 percent is cited in the Foundation’s National
Cost of Epilepsy Study.) The range is narrowed in this fact sheet to simplify
the conflicting reports.
[10] Begley, op.cit. Reported cost of $12.5 million for
prevalent cases in 1995 is converted here to 2004 dollar value using Bureau of
Labor Statistics automated online constant dollars conversion calculator.
[11] From
Centers for Disease Control and Prevention, MMWR 2000:50:25-35 in JAMA,
February 21, 2001–Vol. 285, No. 7.
[12] See
note 4 above.
[13] See
note 4 above.
[14] Ficker, DM. Sudden Unexpected Death and Injury in
Epilepsy. Epilepsia, 41(Suppl.2): S7–S12, 2000.
[15] Data from DeLorenzo, et al, Virginia Medical College
(22,000–42,000 annual deaths from status epilepticus) to which an assumed
increase from SUDEP, accidents, and other direct causes are added. Note that it
is expressed in terms of “deaths due to seizures” rather than “deaths due to
epilepsy,” as half of status cases occur in people with no prior history of
seizures or epilepsy.
[16] Morrell
MD, Pedley, TA. “The Scarlet E”: Epilepsy is still a burden. Neurology,
2000:54:1882–1883. The major portion of advocacy activity conducted by the
[17] Epilepsy Foundation, Professional Advisory Board.
[18] Engel,JR
Jr. A Greater Role for Surgical Treatment of Epilepsy: Why and When? In
Epilepsy Currents, Vol.3, No.2 (March/April) 2003 pp. 37–40.
[19] Repeated
surveys by the
[20] McDermott
S, Moran R. Prevalence of Epilepsy in Adults with Mental Retardation and
Related Disabilities in Primary Care. American Journal on Mental Retardatio.
January; 2005–Vol. 10, No. 1:48-56.
[21] Kanner
A, Jobe PC, Ettinger A. In presentations given at the American Association for
the Advancement of Science Annual Conference, March 9, 2005.