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Group Description

This family support group is for parents and carers of children diagnosed with Dravet Syndrome. This includes children diagnosed with SMEI (Severe Myoclonic Epilepsy of Infancy) and SMEB (Severe Myoclonic Epilepsy of infancy Borderline).


Although the main language is English we also have members speaking German, French, Spanish, Portugese, Greek and many other languages.


Dravet syndrome is a severe lifelong neurological disorder that starts in infancy. Most children with Dravet syndrome have a gene mutation or deletion involving the SCN1A gene.

Children with Dravet syndrome have complex epilepsy often alongside learning disablities, autonomic dysfunction, autistic specrum disorders, ADHD, speech delays, orthopaedic problems such as ankle pronation and scoliosis, behavioural problems, and they sometimes require a feeding tube to maintain weight. Mitochondrial issues are sometimes evident also.

More information about Dravet syndrome can be found on the IDEA League website: www.idea-league.org

Information on fundraising for Dravet syndrome research can be found on the Dravet Syndrome Foundation website: www.dravetfoundation.org

Facebook members can find me here: http://www.facebook.com/home.php#!/profile.php?id=734537876

Please Note: Any advice given here by parents or other members should be discussed with doctors before being acted upon.


This site is dedicated to the many Dravet Angels.

Group Information

  • 392
  • Epilepsy
  • Sep 1, 2002
  • English

Group Settings

  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

Message History