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

JV Skluzacek, KP Watts, O Parsy, B Wical… - …, 2011 - Wiley Online Library
JV Skluzacek, KP Watts, O Parsy, B Wical, P Camfield
Epilepsia, 2011Wiley Online Library
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 …
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.
Wiley Online Library