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Get the answers and the support you’re looking for

From finding a doctor to finding a community of support, these educational tools and resources are available to support you throughout your diagnosis journey.

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Find the right doctor

Finding the right doctor, specialist, or center is one of the most important steps in your journey toward a specific diagnosis. Visit the links here to find one nearest you, and remember that you may have to get a second or even third opinion. It’s important to seek out a specialist or center with experience working with rare and severe epilepsies. You can also reach out to advocacy organizations for help, resources, and to find a specialist near you.

Find a doctorFind a center

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Explore a treatment option

It may be time to explore a treatment option and talk to your doctor for more information. Don’t wait to get answers.

Learn more

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Importance of genetic testing

Approximately 30% to 40% of epilepsy cases may be genetic. Genetic testing may help uncover an accurate diagnosis, which can open the door to more appropriate treatment plans and information on how to improve long-term outcomes. That’s why it’s so important to know which tests are available to you. Click here to learn about common genetic tests, including how the tests are performed and information on insurance coverage.

Genetic testing and counseling resourcesFind a genetics clinic

Downloadable resources

Seizures bring a level of uncertainty few can understand—and in most cases, parents are the first responders. That’s why we compiled top caregiver-recommended tools and resources for easy access.

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Seizure readiness kit
Seizure readiness kit

Advice from a Dravet syndrome mom on how to put together a personalized seizure readiness kit to help you feel more prepared.

Download now

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Face sheet
Face sheet

A template that can be filled out and given to a medical team in the event of an emergency to provide accurate information and clear direction so that no time is lost.

Download now

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Individualized Education Plan (IEP) worksheet
Individualized Education Plan (IEP) worksheet

Tips to help you navigate the annual goals and support services designed for each individual’s needs, ranging from speech therapy, counseling, curriculum modifications, to mobility amenities.

Download now

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Lennox-Gastaut syndrome (LGS) brochure
Lennox-Gastaut syndrome (LGS) brochure

A PDF with detailed educational information and resources to help you and your loved one understand and navigate an LGS diagnosis.

Download now

Disponible en Español

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Dravet syndrome brochure
Dravet syndrome brochure

Educational information and important resources in a PDF to help you and your loved one once you have a Dravet syndrome diagnosis.

Download now

Disponible en Español

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Tuberous sclerosis complex (TSC) brochure
Tuberous sclerosis complex (TSC) brochure

A PDF with important resources and educational information to help you and your loved one learn more about TSC.

Download now

Disponible en Español

Advocacy

Advocacy groups are a great way to connect with other families who may be going through what you’re going through. It’s a community of support that brings families together to share advice, support, participate in events, learn about grant opportunities, or simply feel at ease in each other’s presence. For many, the opportunity to connect with a disease-specific community of people who truly know what they are going through made a world of difference.

Federal and state programs

A number of programs are available to help you gain access to education, financial assistance, and home healthcare services. If you don’t qualify for Medicaid or Social Security Disability Insurance (SSDI) benefits, you can apply for a state waiver to get the support you need. We’ve put some helpful links all in one place.

Federal programs

There are several federal programs that offer various levels and categories of assistance to people with disabilities.

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SSI/SSDI

Supplemental Security Insurance (SSI) and SSDI are programs that offer benefits to disabled people (including children) who have limited income and/or are unable to work due to their disability.

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MEDICAID

Medicaid provides health coverage to millions of Americans, including people with disabilities.

Go now

State programs

Check your state to find out about available programs, such as state financial assistance and resources for those with disabilities. Home and community-based services (HCBS) waivers are also available to help people with long-term care services and support at home.

State waivers

The National Academy for State Health Policy provides a list of resources for children and youth with special healthcare needs.

Find your state waiver
Go now
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Glossary

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Absence
  • Previously known as petit mal seizures
  • Causes a short period of “blanking out” or staring into space
  • Usually affect only a person’s awareness of what is going on at that time, with immediate recovery
Atonic
  • May be referred to as a “drop attack” or “drop seizure”
  • Person has a sudden loss of muscle tone and goes limp
  • Mild seizures look like a head nod or drop, while severe seizures can cause a person to fall to the ground
  • People with these types of seizures may wear helmets to protect from injuries 
Attention-deficit/hyperactivity disorder (ADHD)
  • Also known as ADHD
Atypical absence 
  • Blank staring with eye blinking, chewing movements, or lip smacking
  • Could include finger or hand rubbing, or other small hand movements
  • May begin and end gradually, usually lasting for about 5 to 30 seconds
  • May be difficult to distinguish between this seizure type and typical behavior in those with cognitive impairment 
Behavioral Issues
  • Issues with behavior or irritability 
Clonic
  • Associated with repeated jerking movements lasting a few seconds to a minute that cannot be stopped by restraining or repositioning the arms or legs
  • Most commonly occur in babies
  • Often seen as part of a tonic-clonic seizure and may be difficult to distinguish from a myoclonic seizure; however, the jerking is more regular and sustained during a clonic seizure
  • May also be associated with jerking or clonic movements that follow stiffening of muscles, as in a tonic-clonic seizure, and can last seconds to 1 to 2 minutes
Cognitive impairment
  • Or developmental delays, such as losing interest in toys
Developmental delays
  • Losing interest in toys, speech delays, or other delays identified by a doctor
Dravet syndrome
  • Dravet syndrome is a rare form of epilepsy that typically begins in the first year of life and is marked by frequent, often prolonged seizures in the early phases
Focal aware
  • Used to be called simple partial seizures
  • Person is fully alert and able to interact

Experiences can include:

  • Involuntary motor movements on one side of the body
  • Intense sensory or emotional episodes, such as déjà vu or feeling unexplained emotions
Focal impaired awareness
  • Used to be called complex partial seizures
  • Person loses consciousness, may not respond, and has no memory of the seizure

Experiences vary, but can include:

  • Starting with a blank stare, followed by chewing/lip smacking
  • Random activity like picking at the air or clothes, attempting to pick up objects, remove clothing, repeat words or phrases, etc
Generalized tonic-clonic
  • Formerly known as “grand mal” seizures and is what most people think of when they hear the word seizure
  • Person loses consciousness or awareness, muscles extend and become rigid, and then muscles jerk rhythmically on both sides of the body 
Infantile spasms
  • Occur within first year of life, usually by 4 to 8 months
  • Typically seen as a sudden bending forward of the body with stiffening of the arms and legs lasting for a few seconds
  • Some infants arch their backs as they extend their arms and legs
  • Frequently occur in clusters upon awakening or going to sleep
  • May look like a startle reflex in infants
Lennox-Gastaut syndrome (LGS)
  • Lennox-Gastaut syndrome (LGS) is a rare form of epilepsy that usually begins in childhood and is associated with multiple kinds of seizures.
Myoclonic
  • Sudden, brief shock-like muscle movements or jerks that usually don’t last more than a second or two
  • Person is alert
  • May occur in clusters and may be more pronounced upon wakening 
Personality disorders
  • Such as oppositional disorders
Renal problems
  • Problems with the kidneys
Severe aggression
  • Aggression that is extreme or unpredictable
Skin problems
  • Including bumps on skin or white spots
Sleep disturbances
  • Difficulty sleeping or staying asleep
Strange eye movements
  • Such as gazing or staring
Tonic
  • Muscles in the body, arms, or legs suddenly become stiff or tense
  • May happen during sleep or can cause a person to fall if standing
  • Typically lasts for less than 20 seconds at a time 
Tuberous sclerosis complex (TSC)
  • Tuberous sclerosis complex (TSC) is a genetic condition characterized by the development of noncancerous tumors that may cause a range of symptoms, including seizures.