Dravet Syndrome
What is Dravet syndrome?
In 1978, Charlotte Dravet first described Dravet syndrome, and it was found to have a genetic basis in 2001. Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year of life in an otherwise healthy infant, and it is lifelong. Let’s simplify it with common synonyms or search words:- Severe myoclonic epilepsy in infancy (SMEI)
- Polymorphic epilepsy in infancy (PMEI)
- Epilepsy with polymorphic seizures
- DS
How common is Dravet syndrome?
It’s not fully known how many people are affected—estimated 1 in 15,700 to 1 in 40,000 live births. It affects males and females in equal proportions. Significant risk factors for a Dravet syndrome diagnosis are:- Seizures lasting more than 10 minutes
- Seizures occurring on one side of the body
- Seizures triggered by a warm-water bath in children under 12 months old
What are the signs and symptoms of Dravet syndrome?
Dravet syndrome has been characterized by prolonged febrile and non-febrile seizures within the first year of a child’s life. This disease progresses to other seizure types:- Myoclonic and partial seizures
- Psychomotor delay
- Ataxia
What treatment options are available for Dravet syndrome?
Diagnosing the child early is critical to proper treatment and achieving the best outcome. A child may need a multidisciplinary team to address the many ways Dravet syndrome can affect the family. Seizure treatment is aimed at finding the best combination of medicines to treat chronic seizures and prevent and treat potential seizure emergencies. Getting the best seizure control possible is the goal. This could also help improve the child’s developmental abilities and decrease mortality risk.Where can I find more information about Dravet syndrome?
Dravet Syndrome Articles
Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their
Rare Community Profiles: Mahnaz Asgharnejad Discusses Data on Soticlestat for LGS and Dravet Syndrome
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease
June is Dravet Syndrome Awareness Month!
Did you know that June is considered Dravet Syndrome Awareness Month? Every year, people within the Dravet syndrome community come together to amplify stories, raise
Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome
Seizures associated with conditions such as Dravet syndrome and Lennox-Gastaut syndrome (LGS) can be difficult to treat; these seizures may be treatment-averse and may not
Rare Classroom: Dravet Syndrome
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on
Soticlestat Reduces Seizure Frequency in Dravet Syndrome, Study Shows
Both Dravet syndrome and Lennox-Gastaut syndrome (LGS) are characterized by frequent and often severe seizures. In many cases, those affected require multiple medications to manage
Join in On Celebrating Dravet Syndrome Awareness Month!
During this month, the Dravet Syndrome Foundation (DSF) organizes a variety of activities and resources to help raise awareness for Dravet syndrome, a rare form
Stoke Therapeutics and Acadia Pharmaceuticals Collaborate to Develop Medicines for Rare Neurodevelopmental Disorders
Stoke Therapeutics and Acadia Pharmaceuticals made a joint announcement this week through Business Wire of their collaboration in the development of RNA-based medicines to potentially
