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Welcome to DravetData.com
This site is dedicated to linking people with Dravet Syndrome information and the sharing of personal life experiences of those dealing with this condition as both patients and caregivers. Dravet Syndrome is the severest form of epilepsy within the Dravet Syndrome Spectrum Disorders
Did you know
1 in 20,000 – 40,000 children born have Dravet Syndrome fact from
Dravet Syndrome Spectrum Disorder does not necessarily mean "Dravet Syndrome", the spectrum includes Dravet Syndrome at the severest end of the spectrum, but the spectrum also includes SMEB, EMRF, GEFS+ and ICE-GTC.
A SCN1A mutation does not necessarily mean a diagnosis of "Dravet Syndrome". Although this is the most prevelant gene mutation associated with the syndrome. Other genes have also been documented including SCN2A.
Although the SCN1A gene mutation is usually associated with the Dravet Syndrome Spectrum and in turn Dravet Syndrome, it has also been seen in a variety of other conditions, including: myoclonic-astatic epilepsy (MAE or Doose syndrome), Lennox-Gastaut syndrome (LGS) and infantile spasms fact from
It is also possible to have a SCN1A mutation without exhibiting any ill effects, symptoms or diagnosis.
Our Aim
Welcome to DravetData.com! Our aim is to link people with Dravet Syndrome infomation and personal life experience of those living with this condition, whether they be caregivers, care providers or those individuals diagnosed with the condition. This site is dedicated to the more severe diagnosis under the Dravet Syndrome Spectrum "Dravet Syndrome", but we'll also endeavour to provide a small insight into these other forms.
Our plan is to educate you and help you find the information you are looking for. Within these pages you'll find a multitude of links to information pertaining to Dravet Syndrome and associated topics. All external links open in a seperate page. All the personal stories are supplied by families affected by this condition and outline the various issues they face on a day to day basis. If you have a story you would like to share then please feel free to submit your story by emailing us.
Dravet Syndrome is also known as SMEI (Severe Myoclonic Epilepsy of Infancy), other titles include: SME and Epilepsy with polymorphic seizures.
Recommended Links
What is Dravet Syndrome? In Shazza Language A laymen's guide to Dravet Syndrome symptoms, treatment options and more importantly what drugs should likely be avoided.
What is SMEB? In Shazza Language The sister article to What is Dravet Sydrome? In Shazza Language describing SMEB (Severe Myoclonic Epilepsy Borderline) and the differences between SMEB and SMEI / Dravet Syndrome.
