Dravet syndrome and parent associations: The IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief
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Summary: The advent of social networking via the Internet and the commercial availability of tests for SCN1A mutations permitted the rapid development and growth of parent‐led associations that provide advocacy and support, as well as promote education and research regarding Dravet syndrome (DS) in the last 10 years. The International Dravet syndrome Epilepsy Action League (IDEA League) is a partnership of parents and professionals united in the purpose of creating greater awareness and understanding of DS. In 2004, parents in the IDEA League support network began to collect data from families about their children with DS in order to investigate observations that, in addition to epilepsy, many of the children seemed to share similar problems. The information gained suggests comorbid conditions and raises many hypotheses for further research. The process has led to more rigorous formal studies and an increased understanding of the clinical spectrum of DS. There is an urgent need for collaborative research, comprehensive care, and professional and family education. Mortality appears high, primarily due to sudden unexplained death in epilepsy (SUDEP) and status epilepticus (SE). Most parents wish direct discussions with their child’s physician about mortality. The high risk of death and the many other stresses related to DS result in recurrent grief and loss for patients and families and highlights their need for additional advocacy and support.
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As the child grows, many morbidities, such as behaviour, become the main concern for families who are already skilled at managing seizures.
“As the child grows, many of these morbidities, such as behaviour, become the main concern for families who are already skilled at managing seizures 156 .”
From Developmental and epileptic encephalopathies (2024) · cites this paper as [156]
The Comorbid conditions section (p. 2) reports pronounced behavior problems and other difficulties in children with Dravet syndrome. It does not say these become families’ main concern as children grow, or that families are already skilled at managing seizures. (LLM, conf=0.84)
Experimental — accuracy not yet measuredThe severity of epilepsy in patients with DEEs should not reduce the focus on comorbidities as cognitive, psychiatric (such as ASD, anxiety, mood and behavioural disorders, psychosis), motor and medical disorders occur frequently.
“The severity of epilepsy in patients with DEEs should not reduce the focus on comorbidities as cognitive, psychiatric (such as ASD, anxiety, mood and behavioural disorders, psychosis), motor and medical disorders occur frequently 110,152,153,156,215 .”
From Developmental and epileptic encephalopathies (2024) · cites this paper as [156]
The Comorbid conditions section (p. 2) reports autism-spectrum characteristics, developmental slowing and behavior problems in children with Dravet syndrome; the Discussion (p. 5) calls for integrated care addressing developmental, orthopedic and other medical needs. The paper supports continued attention to comorbidities despite severe epilepsy, but it studies Dravet syndrome rather than DEEs generally and does not establish that anxiety, mood disorders or psychosis occur frequently. (LLM, conf=0.88)
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Ictal ontogeny in Dravet syndrome
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Sudden Unexpected Death in Dravet Syndrome
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Impairment of Sharp-Wave Ripples in a Murine Model of Dravet Syndrome
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Chronic partial TrkB activation reduces seizures and mortality in a mouse model of Dravet syndrome
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Cardiac-Specific Deletion of Scn8a Mitigates Dravet Syndrome-Associated Sudden Death in Adults
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Fatal Status Epilepticus in Dravet Syndrome
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Testimonies submitted for the Institute of Medicine report
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Brain morphometry of Dravet Syndrome
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Helping families cope with the devastation of Dravet syndrome
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Seizure-Related Autonomic Changes in Children
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- Authors
- Skluzacek, J. V., Watts, K. P., Parsy, O., Wical, B., & Camfield, P.
- Affiliations
- Gillette Children's Specialty Healthcare (US)
- Dalhousie University (CA)
- Corresponding author
- Skluzacek, Joan V.
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 2011-04
- Volume
- 52
- Issue
- s2
- Pages
- 95-101
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W1480442999
- Cited by
- 170
- References
- 11
- Citations by year
- 2026: 7 · 2025: 10 · 2024: 22 · 2023: 15 · 2022: 9 · 2021: 17 · 2020: 16 · 2019: 11 · 2018: 11 · 2017: 14 · 2016: 9 · 2015: 8 · 2014: 6 · 2013: 9 · 2012: 6
- FWCI
- 4.59
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Physiology › Diet and metabolism studies
- Keywords
- Dravet syndrome, parent associations, comorbidities, mortality, sudden unexpected death in epilepsy, status epilepticus, grief, parental advocacy, SCN1A mutations, epilepsy, family support
- MeSH terms
- Adaptation, Psychological, Adolescent, Adult, Child, Child, Preschool, Epilepsies, Myoclonic, Female, Grief, Humans, Infant, Male, Mortality, Parent-Child Relations, Self-Help Groups, Comorbidity, Disease Management, Internationality, Young Adult
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