Cited by 170Epilepsy research and treatmentFamily and Disability Support ResearchDiet and metabolism studies

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Dravet syndrome and parent associations: The IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief

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Skluzacek, Joan V., Watts, Kathryn P., Parsy, Olivier, Wical, Beverly, Camfield, Peter·2011·Epilepsia

DOI 10.1111/j.1528-1167.2011.03012.x

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Abstract

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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Epileptic Syndromes in Infancy, Childhood and Adolescence
Stephenson, J. B. P. (2004) · European Journal of Paediatric Neurology · doi:10.1016/j.ejpn.2004.03.001 · Cited by 685
Severe myoclonic epilepsy in infancy: Dravet syndrome.
Dravet, C., Bureau, M., Oguni, H., Fukuyama, Y., & Çokar, Ö. (2005) · PubMed · Cited by 319
On Death and Dying
Kübler-Ross, E. (1972) · JAMA · doi:10.1001/jama.1972.03200150040010 · Cited by 273
On Death and Dying
Kübler-Ross, E. (1973) · Routledge eBooks · doi:10.4324/9780203010495 · Cited by 264
Severe myoclonic epilepsy in infancy (Dravet syndrome)
Fejerman, N. (2004) · CRC Press eBooks · doi:10.1201/b13560-21 · Cited by 217
Sudden unexplained death in children with epilepsy
Donner, E. J., Smith, C. R., & Snead, O. C. (2001) · Neurology · doi:10.1212/wnl.57.3.430 · Cited by 182
Status epilepticus: an evidence based guide
Walker, M. C. (2005) · BMJ · doi:10.1136/bmj.331.7518.673 · Cited by 108
Nonfinite Loss and Grief: A Psychoeducational Approach
Bruce, E. J., & Schultz, C. L. (2001) · DigitalGeorgetown (Georgetown University Library) · Cited by 83
Prenatal diagnosis of congenital heart disease and neonatal outcome--a six years experience.
Strauss, A. S., Tóth, B., Schwab, B., Fuchshuber, S., Schulze, A., Netz, H., & Hepp, H. K. (2001) · PubMed · Cited by 35
Pediatric Experience With Sudden Unexplained Death in Epilepsy at a Tertiary Epilepsy Center
McGregor, A., & Wheless, J. W. (2006) · Journal of Child Neurology · doi:10.1177/08830738060210090701 · Cited by 21

Show all 11 references

Research works printed but not linked: 2

Skluzacek J, 2006, Epilepsia
Wical B, 2009, Epilepsia

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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
DOI: 10.1111/j.1528-1167.2011.03012.x
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
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor, 3 d)
Locations: Epilepsia (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Clinical Neurology › Epilepsy research and treatment
Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Health Sciences › Medicine › Physiology (medical) › 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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Dravet syndrome and parent associations: The IDEA League experience with comorbid conditions, mortality, management, adaptation, and grief

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