June 23rd is Dravet Syndrome Awareness Day.
While epilepsy is not rare, there are rare subsets of the condition, and Dravet Syndrome is one such type of rare epilepsy.
Dravet Syndrome (DS) is a severe type of epilepsy characterised by often prolonged (5+ minute) seizures that usually begin in the first year of life. It affects one in 20,000 – 40,000 people worldwide. It is a genetic condition, often caused by SCN1A gene mutations, most of which are de novo.
Dravet can be an extremely difficult condition for both children living with condition but also for their extended families and today is an important day for raising awareness, and recognising all those living with the condition and the families that support them.
Up to 8% of children who have their first seizure by 12 months old may have Dravet syndrome. Seizures are difficult to control with Anti-Seizure Medications (ASMs) or other treatments, while a range of other symptoms also present including sleep disorders, behavioural problems, sensitivity to infections and ataxia. Most children have normal development when seizures begin but as seizures continue, they typically develop developmental disability and miss developmental milestones.
Further information on Dravet Syndrome can be found by visiting the ‘Rare Epilepsy Disorders’ section of our website; or by visiting the ‘Dravet Syndrome Ireland’ website.
If you are supporting a loved one with Dravet Syndrome, our Community Resource Officers are available for further information and support. You can get in touch by visiting the ‘Our Local Services’ section of our website.