Dravet syndrome is classified as a developmental and epileptic encephalopathy (also known as a DEE), which is part of a group of severe epilepsies with frequent and difficult to treat seizures and significant developmental delays. Seizures in Dravet syndrome usually begin during the first 2-15 months of life, often in the presence of fever or warm temperatures. Seizures are frequently prolonged, and are not well managed with current medications. Patients present with a variety of seizure types that generally evolve with age. As with all developmental and epileptic encephalopathies, Dravet syndrome includes more than just difficult to control seizures. Other comorbidities such as developmental delay and abnormal EEGs often emerge during the second or third year of life. Common issues associated with Dravet syndrome include:

• Prolonged seizures

• Frequent seizures

• Behavioral and developmental delays

• Movement and balance issues

• Orthopedic conditions

• Delayed language and speech issues

• Growth and nutrition issues

• Sleeping difficulties

• Chronic infections

• Sensory integration disorders

• Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections. Research for improved treatments, particularly disease-modifying treatments, offers patients and families hope for a better quality of life for their loved one