- I have been a member of Dravet Syndrome UK for about 3 years, shortly after my son was diagnosed with Dravet Syndrome when he was 4 years old. They are a small but growing charity supporting families and funding research into Dravet Syndrome. Dravet Syndrome can be diagnosed clinically or by a genetic test, it causes very difficult to control (intractable) epilepsy, developmental delay, autism, and movement disorders. I attended as a parent and as an exhibitor of Trabasack, which was developed for my son, and which can be a beneficial aid to children with the condition.
- Our press release can be found below:
Tweeting my notes using #DravetUK
During the conference I tweeted my notes using the hashtag #dravetuk to raise awareness and provide a record of information after the conference.
This is not intended to be a full record of what was discussed at the conference, just some of facts that I found noteworthy.
I hope to add links to the slides and handouts from the event when they are sent out.
Please remember that tweets have to be less than 140 characters. I also lost 9 using the #dravetuk hashtag, so please excuse my use of abbreviated English to fit everything in!
There were some excellent talks that I did not cover. (phone battery and tiredness!)
I may have attributed some tweets to the wrong talk!
Dr Elaine Hughes, Consultant Paediatric Neurologist – King’s College Hospital & Evelina Children’s Hospital
Early Intervention and Medication Options
Below are my tweets taken from the contents of Dr. Elaine's talk and screen notes:
Personal Overview of Dravet Syndrome and Seizure Types by Dr Charlotte Dravet
Dr Dravet Bio:
Dr Charlotte Dravet is French psychiatrist and epileptologist, born July 14, 1936. She has spent her adult life studying the disease.
Charlotte graduated in 1965, she studied the epilepsy which would be later named the Lennox-Gastaut syndrome.
She noticed that many of the children diagnosed with Lennox-Gastaut Syndrome had different seizures. Originally called severe myoclonic epilepsies in infancy, her research lead to a new condition described as Dravet syndrome.
Charlotte Dravet has been President of the French League Against Epilepsy and a member of the Commission on Classification of Epilepsies of the ILAE. She is also an Ambassador for epilepsy. She has participated in numerous congresses, lectures and is the author of a number of published works. Now retired, she continues to work in France and Italy to improve the care of people with epilepsy.
More about here life can be found here:
- She traveled over from France to present a talk on the different types of seizure seen in Dravet Syndrome. She was later guest of honour at the fundraising ball in the evening.