The impact of COVID-19 in Dravet Syndrome: a UK survey

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The COVID-19 pandemic has raised health concerns worldwide, but particularly in communities that may be at higher risk from illness and infection. To understand this better in the Dravet syndrome community, Dravet Syndrome UK (DSUK) performed a survey of families caring for an individual living with Dravet syndrome from June-July 2020 to assess the impacts of the SARS-CoV-2/COVID-19 pandemic (Balestini et al 2020).

Of 116 survey responses, 22 reported symptoms of COVID-19, although only one individual had a confirmed positive test. Among those reporting possible or probable COVID-19, about 50% had worsened seizure outcomes, including increased frequency and/or duration of seizures. Six individuals did need to seek care in a hospital setting. There were no deaths related to COVID-19 among those reporting symptoms, and overall there did not appear to be any increased risk of severe outcomes from COVID-19 for those living with Dravet syndrome. While this study is certainly not comprehensive, including only retrospective reports from a small sample size without consistent information on positive status, it is encouraging to add to the small body of literature examining the health impacts of COVID-19 on more severe forms of epilepsy and generally agreeing that risks do not seem to be particularly high among these groups for severe outcomes from COVID-19.

The impact of Dravet syndrome has already been reported to affect all aspects of health and well-being for the whole family (Nabbout et al 2020; Bailey et al 2020; Villas et al 2017), and the current pandemic has only exacerbated these challenges. Unsurprisingly, many caregivers in the DSUK survey reported increased anxiety related to shielding (or socially isolating) from COVID-19. These findings continue to highlight how difficult all aspects of the COVID-19 pandemic have been for families already navigating daily life with Dravet syndrome. If you find yourself struggling, it can help to know you aren’t alone. Many families have found the recent presentation from DSF’s Day of Dravet entitled “Caregiver Stress in the Time of COVID” presented by Dr. Jamie Zuckerman as a validating talk that deals with many of the additional stressors affecting families right now. You can watch the talk here.


Balestini S., Wilson G., Eldred C., Evans H., Sisodiya SM. (2020) The impact of COVID-19 in Dravet Syndrome: a UK survey. Publication pending.

Nabbout, R., Dirani, M., Teng, T., Bianic, F., Martin, M., Holland, R., Chemaly, N., and Coque, N. (2020) Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers. Epilepsy Behav. 108, 107094

Bailey, L. D., Schwartz, L., Dixon-Salazar, T., Meskis, M. A., Galer, B. S., Gammaitoni, A. R., and Schad, C. (2020) Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Epilepsy & Behavior. 112, 107377

Villas, N., Meskis, M. A., and Goodliffe, S. (2017) Dravet syndrome: Characteristics, comorbidities, and caregiver concerns. Epilepsy & Behavior. 74, 81–86

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