Charlotte Dravet: Life and contributions to epileptology

The global epileptology and neurology community lost an outstanding, educator, clinician, and scientist on May 9th, 2025, with the death of Dr. Charlotte Dravet (Figure 1) at age 88 years in Marseille, France. Charlotte Dravet was a pediatric epileptologist and psychiatrist, former president of the French League Against Epilepsy (1997–1999), clinical epileptologist, and Associate Medical Director (1989–2000) at the Saint Paul Center, Marseille, France. Dr. Dravet was known worldwide for the epilepsy syndrome that carries her name and made significant contributions to epileptology (e.g., education, delineations of new epilepsy syndromes), was greatly dedicated to her patients, and supported the activities of lay associations.1 In addition, she was a clinical researcher who surmounted barriers based on gender. Charlotte Dravet was born in Marseille, France, on July 14, 1936. She graduated from Marseille University, France, and trained in Pediatrics from 1962 to 1965. Her 1965 Medical thesis on “Encéphalopathie épileptique de l'enfant avec de pointe onde lente diffuse. petit mal variant” (Childhood epileptic encephalopathy with diffuse slow spike–waves. petit mal variant; Figure 2) was devoted to the delineation of the Lennox–Gastaut syndrome that led to a major publication in Epilepsia (Figure 3) and its later international recognition.2-4 In 1971, she was certified as a psychiatrist and trained in the pediatric EEG Department of the Saint Vincent de Paul Hospital and in the Department of Functional Neurosurgery of the Sainte Anne Hospital, in Paris. Charlotte Dravet was an Honorary Member of several chapters of the International League Against Epilepsy (ILAE). She was awarded as “Ambassador for Epilepsy” by the ILAE and the International Bureau for Epilepsy (IBE) in 1989, with the European Epileptology Prize by the Commission on European Affairs (CEA) of the ILAE in 2004, and with the “Lifetime Achievement Award” by the ILAE and IBE in 2017. In 2011, she was awarded “Chevalier de la Légion d'Honneur de la République Française,” the French highest order of merit for her contribution to medicine. To further our understanding of the epilepsy syndrome that bears her name, Dr. Dravet participated as a scientific board member on several national and international research and advisory committees. She actively promoted research, clinical awareness, and improved diagnostic and treatment approaches for one of the most severe developmental and epileptic encephalopathies (DEEs) through these roles. She spent the total of her professional career as a full-time clinical epileptologist at the Saint Paul Center in Marseille under Henri Gastaut and Joseph Roger, in close collaboration with her friend Michelle Bureau, from 1965 to 2000. She lived on the premises, and only moved out after her retirement, when she also started to work abroad, especially in Italy. She played an active role in the delineation of epilepsy syndromes, especially through several workshops organized at the Centre Saint Paul, and through the first edition of the book “Epileptic syndromes in infancy, childhood and adolescence”5 and its many follow-ups, published in French, English, Japanese, Chinese, and Spanish. After her retirement from the Saint Paul Center, Dr. Dravet became an Honorary Consultant at the Childhood Epilepsy Unit, Policlinico A. Gemelli of the Università Cattolica del Sacro Cuore in Rome, Italy. She was still seeing and following many patients, receiving several with their families at her home and remained very active, giving her last conference in China (by internet) only weeks before her demise. Charlotte Dravet devoted her life to the delineation of myoclonic epilepsies during infancy and childhood.4-10 Her major contribution to epileptology was the original description of the severe myoclonic epilepsy of infancy (SMEI) in 1978.8 In 2001, the ILAE Commission on Classification decided that SMEI should be named “the Dravet syndrome.” The characteristics of the syndrome were confirmed and further delineated by other authors over the years; two forms were individualized: the typical and the borderline forms, in which the myoclonic component is absent or subtle.10 The Dravet syndrome later became the first epilepsy syndrome shown to be caused mainly by pathogenic SCN1A gene mutations.11 She also described the “benign myoclonic epilepsy of infancy,”6 studied the evolution of West syndrome12 and was interested in many other forms of epilepsy, for example, in childhood absence epilepsies,13 focal epilepsies in infancy, and myoclonus in degenerative disorders.4, 5 She also contributed to the study of etiology of other epilepsy disorders14, 15 and the effects of antiseizure drugs in pregnancy.16 Dr. Dravet trained epileptologists from around the world (mainly from Europe, Asia and Latin America) who spread the Marseille School's approach, among many others: Carlo-Alberto Tassinari, Bernardo Dalla Bernardina, Renzo Guerrini, Pierre Thomas, Socorro Gonzalez, Francisco Rogel, Sergio Cordova, Juan Pociecha, Xavier Salas-Puig, Marco T. Medina, and Pierre Genton.4 She spent several years living at the Saint Paul Center, where she would visit the ward at night to watch her patients while they slept or spend hours going to the ward to watch them, often recording them on video, which led to the first-hand description of particular, sometimes specific, types of seizures: the “tonic” seizures of sleep in the Lennox–Gastaut syndrome and the vast variety of long or brief seizures in the Dravet syndrome. Her talent was a well-balanced mix of descriptive analysis and synthetic overview. Charlotte Dravet died on May 9, 2025, in Marseille, France. She was an exceptional mentor with a heartful personality. She inspired several generations of epileptologists, and countless people with epilepsy and their families around the world. None. None of the authors have any conflict of interest to disclose. 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