International Dravet Syndrome Awareness Day Date in the current year: June 23, 2025

Dravet syndrome, formerly known as severe myoclonic epilepsy of infancy (SMEI), is characterized by prolonged, medication-resistant seizures. It is a genetic condition caused by a mutation in the SCN1A gene, though this is not always the case as other genes may be involved. In most cases, these mutations are spontaneous rather than hereditary. The disorder was first described by French psychiatrist and epileptologist Dr. Charlotte Dravet in 1978 and renamed in her honor in 1989.

Prolonged, frequent seizures are the main symptom of Dravet syndrome. They typically begin within the first 2–15 months of life and are often triggered by high temperatures or fever. Dravet syndrome was once mistakenly thought to be caused by vaccines because vaccinations often cause fever, which triggers seizures.

Other symptoms and comorbid conditions typically emerge during the second or third year of life. These include developmental delay, coordination and balance problems, sleep disorders, behavioral disorders, chronic infections, abnormal EEGs, and dysautonomia, a condition in which the autonomic nervous system does not function properly and can lead to difficulty regulating blood pressure, heart rate, and body temperature. Dravet syndrome can present along a spectrum, and different patients may experience different symptoms of varying severity.

One of the worst aspects of Dravet syndrome is that this form of epilepsy does not respond well to anticonvulsant medications. Furthermore, certain medications, such as sodium channel blockers, can exacerbate seizures. While it is possible to reduce seizures with medication, treatment protocols may vary from patient to patient. The first-line treatment for Dravet syndrome is valproate (valproic acid). A ketogenic diet (high in fat and low in carbohydrates) may help, but it will not eliminate seizures altogether.

Children with Dravet syndrome usually require continuous care and supervision to help them avoid common seizure triggers such as abrupt temperature changes, extreme temperatures, overexertion, overexcitement, stress, and flickering light.

There is no cure for Dravet syndrome, so patients will have to manage epilepsy for life. Patients with the syndrome have a higher rate of premature mortality; common causes of death are sudden unexpected death in epilepsy (SUDEP), status epilepticus (prolonged seizures), seizure-related accidents, such as drowning or head injuries, and chronic infections.

International Dravet Syndrome Awareness Day is celebrated every June 23 by patient organizations around the globe. The main goal is to educate healthcare professionals and the public about this rare disease, promote early diagnosis and research, and provide patients’ families with the necessary resources to manage Dravet syndrome and improve patients’ quality of life.