Once epilepsy is diagnosed, it is important to begin
treatment as soon as possible. For about 80 percent
of those diagnosed with epilepsy, seizures can be
controlled with modern medicines and surgical
techniques. Some antiepiletic drugs can interfere
with the effectiveness of oral contraceptives. In
1997, the FDA approved the vagus nerve stimulator
for use in people with seizures that are not well-controlled
by medication.
Most people with epilepsy lead outwardly normal
lives. While epilepsy cannot currently be cured, for
some people it does eventually go away. Most
seizures do not cause brain damage. It is not
uncommon for people with epilepsy, especially
children, to develop behavioral and emotional
problems, sometimes the consequence of embarrassment
and frustration or bullying, teasing, or avoidance
in school and other social setting. For many people
with epilepsy, the risk of seizures restricts their
independence (some states refuse drivers licenses to
people with epilepsy) and recreational activities.
People with epilepsy are at special risk for two
life-threatening conditions: status epilepticus and
sudden unexplained death. Most women with epilepsy
can become pregnant, but they should discuss their
epilepsy and the medications they are taking with
their doctors. Women with epilepsy have a 90 percent
or better chance of having a normal, healthy baby.
Scientists are studying potential antiepileptic
drugs with goal of enhancing treatment for epilepsy.
Scientists continue to study how neurotransmitters
interact with brain cells to control nerve firing
and how non-neuronal cells in the brain contribute
to seizures. One of the most-studied
neurotransmitters is GABA, or gamma-aminobutryic
acid. Researchers are working to identify genes that
may influence epilepsy. This information may allow
doctors to prevent epilepsy or to predict which
treatments will be most beneficial. Doctors are now
experimenting with several new types of therapies
for epilepsy, including transplanting fetal pig
neurons into the brains of patients to learn whether
cell transplants can help control seizures,
transplanting stem cells, and using a device that
could predict seizures up to 3 minutes before they
begin. Researchers are continually improving MRI and
other brain scans. Studies have show that in some
case, children may experience fewer seizures if they
maintain a strict diet - called the ketogenic diet -
rich in fats and low in carbohydrates.
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Citizens United for Research
in Epilepsy (CURE)
730 N. Franklin
Suite 404
Chicago, IL 60610
info@CUREepilepsy.org
http://www.CUREepilepsy.org
Tel: 312-255-1801
Fax: 312-255-1809
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Epilepsy Foundation
8301 Professional Place
Landover, MD 20785-7223
postmaster@efa.org
http://www.epilepsyfoundation.org
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684
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Epilepsy Institute
257 Park Avenue South
New York, NY 10010
website@epilepsyinstitute.org
http://www.epilepsyinstitute.org
Tel: 212-677-8550
Fax: 212-677-5825
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Parents Against Childhood
Epilepsy (PACE)
7 East 85th Street
Suite A3
New York, NY 10028
pacenyemail@aol.com
http://www.paceusa.org
Tel: 212-665-PACE (7223)
Fax: 212-327-3075
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Family Caregiver Alliance/
National Center on Caregiving
180 Montgomery Street
Suite 1100
San Francisco, CA 94104
info@caregiver.org
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508
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National Council on Patient
Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD 20814-6082
ncpie@ncpie.info
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
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National Family Caregivers
Association
10400 Connecticut Avenue
Suite 500
Kensington, MD 20895-3944
info@thefamilycaregiver.org
http://www.thefamilycaregiver.org
Tel: 301-942-6430 800-896-3650
Fax: 301-942-2302
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National Organization for
Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
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IRSA (International
RadioSurgery Association)
P.O. Box 5186
Harrisburg, PA 17110
office@irsa.org
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809
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Charlie Foundation to Help
Cure Pediatric Epilepsy
1223 Wilshire Blvd.
Suite #815
Santa Monica, CA 90403
ketoman@aol.com
http://www.charliefoundation.org
Tel: 800-FOR-KETO (367-5386) 310-395-6751
Fax: 310-393-1978
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Epilepsy Therapy Development
Project
11921 Freedom Drive
Suite 730
Reston, VA 20190
http://www.epilepsytdp.org
Tel: 703-437-4250
Fax: 703-437-4288
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Antiepileptic Drug Pregnancy
Registry
MGH East, CNY-149, 10th Floor
149 13th Street
Charlestown, MA 02129-2000
ebaldwin@partners.org
http://www.aedpregnancyregistry.org
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307
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