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Living with Epilepsy

Epilepsy Facts & Stats – Epilepsy Frequently Asked Questions

Epilepsy is a generic term for a variety of seizure disorders. A person with two or more unprovoked seizures is typically diagnosed with epilepsy. A seizure is a brief disturbance in the electrical activity of the brain. One in 26 people will develop epilepsy in their lifetime
A seizure is a single occurrence, whereas epilepsy is typically characterized by two or more unprovoked seizures. You can have a seizure without having epilepsy.

Epilepsy affects three million Americans of all ages. Approximately 200,000 new cases of seizures and epilepsy occur each year.

  • Prevalence: One in 26 people will develop epilepsy at some point in their life, and 1 in 10 will experience a seizure.

  • Comparison: There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy, muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

  • Children and Adults: About 456,000 U.S. children 17 and younger and about 2.9 million U.S. adults 18 and older report having active epilepsy.

🌎 Epilepsy and Disparity: Statistics by Group

Epilepsy affects people of all backgrounds, but rates and access to care can vary significantly across different racial and ethnic groups:

  • African Americans/Black Americans: Approximately 637,000 African Americans have been told by a physician they have epilepsy or a seizure disorder. Black Americans are significantly more likely to have epilepsy compared to other ethnicities, and are 60% less likely than White Americans to undergo surgical treatment for epilepsy.

  • Hispanic/Latino Americans: About 400,000 Hispanic Americans in the nation live with epilepsy. A high degree of fear and misunderstanding about the condition persists within the Hispanic community.

  • Asian Americans: Data suggests that 255,000 Asian Americans in the United States have epilepsy. Obstacles include limited research and challenges finding affordable, quality care available in Asian languages.

In up to 70% of cases, the cause is unknown. For the remaining 30%, causes may include infections, fevers, brain tumors, stroke, traumatic brain injury, or brain malformation. Some forms of epilepsy are genetic. Epilepsy is never contagious.

Epilepsy is treated with medications, surgery, devices, or a special diet.

  • Medication (AEDs): Medication therapy is the most common and often the first treatment option. A seizure-prevention medication (AED or anticonvulsant) must be taken as prescribed to maintain a certain blood level.

  • Outcomes: Approximately 500,000 Americans successfully control their seizures with medical care. However, approximately one million people do not find relief from their seizures and/or experience treatment side effects.

Contact the Epilepsy Foundation Texas for more information at 888-548-9716 or info@eftx.org.

A seizure dog is a dog trained as a service animal to respond to a seizure. Service dogs are trained to perform tasks like barking to alert caregivers, moving to protect the person, or activating an alarm. The law protects a person’s right to use service animals in public places.

  • To find a list of places that train service animals for individuals with seizures, go here.

  • In Texas, organizations like Service Dog Express (San Antonio, Austin, Houston, DFW area), River’s Edge Dog Academy (College Station), and The Dog Alliance (Cedar Park/Austin) train dogs for epilepsy and seizure alerts.

To qualify for Social Security disability benefits, you must have worked in jobs covered by Social Security and have a medical condition that meets their definition of disability. Benefits usually continue until you are able to work again on a regular basis.

Some epilepsies can be treated with medical devices. Some common devices used to control seizures are the VNS and RNS devices:

  • VNS Therapy (Vagus Nerve Stimulation): A device is placed near the collarbone and an electrode is connected to the vagus nerve in the neck. Programmed stimulation is delivered from the generator, and a magnet can trigger bursts of stimulation.

  • RNS Therapy (Responsive Neurostimulation): The RNS® System is a smart, adjustable, and reversible device tailored to each person. It learns what is happening in a person’s brain and delivers programmed stimulation.

  • If you believe you have been discriminated against in an employment transaction due to your disability (or race, age, sex, etc.):

    • Texas Workforce Commission (TWC): TWC’s Civil Rights Division investigates discrimination under the Texas Labor Code and operates in cooperation with the federal EEOC. When you file a charge with the TWC, it is automatically “dual-filed” with the EEOC.

    • EEOC (Equal Employment Opportunity Commission): You can file a charge of discrimination if you believe your employer engaged in discrimination.

    • Visit https://bit.ly/1UDWXrU to find out more from the TWC.

There are programs and resources to help pay bills. Visit www.needhelppayingbills.com to find out more.

Know The Hidden Signs of Epilepsy in Children

Epilepsy is a common neurological disorder that can be difficult to detect in young children. Not all seizures are convulsive – there are many types of seizures that children or adolescents experience. Some signs appear to be normal behavior and may last a very short time.

Some signs to watch for in small children include:

  • Short attention blackouts that look like daydreaming
  • Sudden falls for no reason
  • Lack of response for brief periods
  • Dazed behavior
  • Unusual sleepiness and irritability when wakened from sleep
  • Head nodding
  • Rapid blinking
  • Frequent complaints from the child that things look, smell, sound, taste or feel “funny”
  • Clusters of “jackknife” movements by babies who are sitting down
  • Clusters of grabbing movements with both arms in babies lying on their backs
  • Sudden stomach pain followed by confusion and sleepiness
  • Repeated movements that look out of place or unnatural
  • Frequent stumbling or unusual clumsiness
  • Sudden repeated episodes of fear for no apparent reason
  • Early Detection is Key
  • Early recognition and treatment of children who experience seizures is important to prevent further problems. Undiagnosed seizures can lead to:
  • Learning disabilities, as brief blackouts make it difficult to follow instructions and impede understanding at school.
  • Safety risks, because a sudden loss of awareness in certain situations, (swimming in a pool, climbing a tree) can lead to serious injury.
  • Behavior problems, as the child experiences feelings that are difficult to communicate and may act out.

Epilepsy affects millions, but together, we create care that comforts, community that connects, and hope that heals.

 
Your gift today provides essential support for Texans living with epilepsy. Every dollar given helps build a world where no one faces epilepsy alone by funding local programs like free camps and medical clinics.
 

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