Dravet Syndrome

Dravet syndrome is a rare genetic epilepsy characterized by prolonged febrile seizures and developmental delay. Seizures are difficult to control and can be exacerbated by certain anti-epileptic medications called sodium channel blockers.

Key characteristics and symptoms of Dravet syndrome

Key characteristics

Seizures: The first seizure occurs during the first year of life. Febrile seizures, or seizures that come after a hot bath or fever from illness, are a signature symptom for patients with Dravet.

Developmental delay: After seizures begin, developmental slowing, stagnation, regression, and some degree of intellectual disability typically occur. Prior to the onset of seizures, patients with Dravet develop typically.

Other common symptoms
  • Speech impairment
  • Movement difficulties
  • Gastrointestinal issues
  • Constipation
  • Behavior problems
  • Difficulty sleeping
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How is Dravet syndrome diagnosed?

A diagnosis of Dravet syndrome is made based on symptoms but can be reaffirmed through genetic testing that identifies a mutation in the SCN1A gene. Symptoms required for diagnosis include normal development prior to seizures, two or more seizures before age one year, two or more seizures lasting longer than 10 minutes, and failure to respond to anti-epileptic medication.

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How is Dravet syndrome treated?

Currently there is no cure for Dravet syndrome. Patients are treated for their symptoms, not for the underlying cause of the disease. Seizure control is the primary goal for Dravet patients. There are currently companies investigating treatments for Dravet syndrome including possible gene therapies.

AmbitCare can help you understand how rare disease might be part of your story.

The average person with a rare disease sees 7.3 specialists over a span of 5-7 years before receiving an accurate diagnosis. AmbitCare Ambassadors provide free services including listening to understand your challenges, guiding you on potential next steps, and recommending resources.

Join our community

Have additional questions? Contact an AmbitCare Ambassador by phone at 508-203-6891 or by email at info@ambitinc.com today.

Our hours of operation are Monday-Friday, 9-5pm ET. An AmbitCare Ambassador will typically respond within 1-2 business days.

* Please note that while AmbitCare Ambassadors can help you better understand what resources are available for families with loved ones suffering from seizures and developmental delays, they are not licensed medical providers and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments.

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