Extend the Dravet Syndrome Week to the Dravet Syndrome Month of June.
This petition made change with 267 supporters!
The Coalition for the Rights of Disabled People would like to see Dravet Syndrome Week extended to be the Dravet Syndrome Month of June.
Dravet Syndrome needs to have the awareness that would be created by increasing the awareness week, in June, to the awareness month of June!
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Dravet syndrome is a rare genetic disorder which occurs in roughly one in every 30,000 births. It is a progressive disorder characterized by multiple seizure types, often including life-threatening status epilepticus (prolonged seizures that require emergency care.) The course of the condition is variable from patient to patient and earmarks of the syndrome include multiple seizure types that are resistant to treatment, developmental delays, lowered immunity, orthopedic concerns, and hyperactivity. A significant number of patients have a family history of febrile seizures or seizure disorders. The mortality rate of Dravet Syndrome is very high, from 15.9% to 18%
Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed.
These conditions include:
behavioral and developmental delays
movement and balance issues
delayed language and speech issues
growth and nutrition issues
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
More awareness needs to be created so more funding will be given for research into the catastrophic form of epilepsy to help kids like Bella, pictured above with her mother Deborah Camacho, who has to fight for live daily! Extending Dravet Syndrome Awareness Week into the Dravet Awareness Month of June will help create that much needed awareness!
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