What is a syndrome?
A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they experience difficulties with learning.
If a child is diagnosed with a particular syndrome, it allows doctors to provide more information about what is most likely to happen to them in future years, not only from the point of view of the epilepsy but also in relation to other features such as learning skills.
In the UK there are support groups for parents of children with some types of syndrome. Details of the support groups can be obtained from the following
Contact a Family
209-211 City Road
London EC1V 1JN
Freephone helpline: +44 (0)808 808 3555
Email: info@cafamily.org.uk
www.cafamily.org.uk
Because this page is written by an epilepsy healthcare professional and not by Epilepsy Action, it falls outside the requirements of the Information Standard.
Our thanks
Epilepsy Action would like to thank
- Dr Richard Appleton, and Dr Rachel Kneen, consultant paediatric neurologists at Alder Hey Children’s Hospital, Liverpool, UK and
- Dr Stewart Macleod, consultant paediatric neurologist at Royal Hospital for Sick Children, Glasgow, UK.
They have kindly prepared the information on this page. It is based on their own research, experience and expertise.
This information is exempt under the terms of The Information Standard.
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Updated March 2013To be reviewed March 2015
Comments: read the 3 comments or add yours
Comments
Would it be possible to get some information on EFMR (pcdh-19 mutation) to raise awareness and help parents like myself to understand our daughters condition
Hi Kristine
Due to its recent discovery, EFMR does not have a specific classification according to the International League AgainstEpilepsy(ILAE). It has been put forward to the ILAE and as soon as it has a specific classification we will add it to our information.
Regards
Diane Wallace
Advice and Information team.
Hi - I've visited your site and found it very interesting and highly informative. My daughter has Dravet Syndrome a rare and catastrophic form of epilepsy. You can read more about it here: https://dravet.org/ Our aim is to promote early diagnosis by raising awareness of this syndrome to both professionals and organisations like yourself. We would be delighted if you were to feature something on your site about Dravet Syndrome. Kind regards Angie Lay