Frequently Asked Questions: 


What is epilepsy?   Why is epilepsy misunderstood?
What are the symptoms of epilepsy?     What is the psychosocial impact?
How common is epilepsy and how many are affected?   Driving in Minnesota
What are the different kinds of treatments?   What is SUDEP?
    Do I qualify for assistance?


WHAT IS EPILEPSY?


Epilepsy is a neurological disorder of the brain resulting in seizures. One seizure is not considered epilepsy. Epilepsy is "more than one seizure". A seizure is a change in sensation, awareness, behavior brought about by abnormal discharges in neurons in the brain. Normally, neurons carrying electrical impulses form a network allowing communication between the brain and the rest of the body. Neurons "fire" or send electrical impulses toward surrounding cells, stimulating neighboring cells to fire. In people with epilepsy, too many neurons fire at one time, causing an "electrical storm" within the brain. There are more than 20 different types of seizures.



WHY IS EPILEPSY MISUNDERSTOOD?
Witnessing a seizure can be a frightening experience for someone who is unfamiliar with epilepsy. This fear can cause the disorder to be perceived far worse than it is. This "fear" dates back to ancient times, when people thought that anyone who experienced a seizure was "possessed by demons". Today, even though many people are affected by epilepsy, it is still a misunderstood condition that continues to attract prejudice and is the source of many social and psychological problems for people with epilepsy.


 
WHAT ARE THE SYMPTOMS OF EPILEPSY?
According to the Epilepsy Foundation, the following symptoms may indicate someone has epilepsy and a medical exam is advised if one or more of these symptoms are present. The symptoms include:

        •  short periods of blackout or confused memory 
        •  occasional "fainting spells" in which bladder or bowel control is lost, followed by extreme fatigue 
        •  episodes of blank staring in children 
        •  brief periods of no response to questions or instructions 
        •  sudden falls in a child for no apparent reason 
        •  episodes of blinking or chewing at inappropriate times 
        •  a convulsion with or without a fever. 



WHAT IS THE PSYCHOSOCIAL IMPACT?
People with controlled epilepsy are limited more often by public perceptions and stereotypes than by the disorder itself. People with epilepsy can be sensitive to public misperceptions which can make them self-conscious and embarrassed about their condition. Some people with epilepsy refrain from seeking out therapies that could improve their quality of life, because they feel they will invariably face discrimination.  A major needs assessment survey of people affected by epilepsy and their families was conducted and reported in 1992. During the public forums, the following comments were made:

"We need to help people understand what epilepsy is all about."
"Most people with epilepsy will tell you that they have never met anyone with epilepsy."
"There is still a stigma that surrounds epilepsy."
"Epilepsy is a disorder that is still in the closet."
"I feel that the greatest problem any child faces with epilepsy is ignorance and prejudice."



HOW COMMON IS EPILEPSY AND HOW MANY ARE AFFECTED?
Epilepsy can strike at any time in one's life. About 2.2 million people in the USA have epilepsy. Approximately, 150,000 new cases are diagnosed annually. Anyone can develop epilepsy at any age, but 30% of epilepsy cases are children under 18 years of age and 20% develop epilepsy before the age of five. Each year, 120,000 children seek medical attention because of a first or newly diagnosed seizure. Of these children, about 37,000 go on to develop recurring seizures or epilepsy.

WHAT IS SUDEP? 
A death is referred to as a "SUDEP" when a seemingly healthy person with epilepsy dies unexpectedly, and no reason for the death can be found.

Common Criteria:
  • The person had epilepsy, defined as recurrent unprovoked seizures.
  • The person died unexpectedly while in a reasonable state of health.
  • The death occurred suddenly.
  • The death occurred during normal activity, often during sleep and found in or near the bed.
  • An obvious medical cause of death could not be determined at autopsy.
  • The death was not the direct result of status epilepticus
For more information on SUDEP, click here.

 

MORE 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.  Of major chronic medical conditions, epilepsy is among the least understood, even though one in three adults knows someone with the disorder. Epilepsy is not a single entity, but a family of more than 40 syndromes  that affects more than 2.2 million people in the U.S.  and 50 million worldwide. 
Prevalence

Epilepsy is the forth most common neurological disorder in the United States after Alzheimer’s disease, migraine and stroke.  It is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined.  This year another 150,000 people in the U.S. will be diagnosed with epilepsy. Ten percent of new patients fail to gain control of seizures despite optimal medical management.
   
Cost

Epilepsy imposes an annual economic burden of $17.6 billion  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.
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 U.S., it currently affects more than 326,000 children under the age of fifteen, more than 90,000 of whom have severe seizures that cannot be adequately treated. 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 U.S. have the condition. 
   
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.  Lack of knowledge about proper seizure first aid exposes affected individuals to injury from unnecessary restraint and from objects needlessly forced into their mouths. 
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 (25.8 percent)—while 50 percent of people who have both cerebral palsy and mental retardation also have epilepsy. 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. 
 
Contact Information and Referral with additional questions.  651.287.2303 or 1.800.779.0777, ext. 2303.

 

 

St. Paul Office / Used Clothing
1600 University Ave. W. Suite 300
St. Paul, MN 55104
800.779.0777 or 651.287.2300 

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Epilepsy Foundation of Minnesota, Inc.
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