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Peterborough to Great Yarmouth Charity Bike Ride · 13 September 2019
Dravet syndrome is a very rare and severely disabling type of epilepsy that presents in infancy, sometimes called a catastrophic epilepsy. It begins in the first year of life, with frequent and prolonged seizures. It affects approximately 1 in 19,000 people and the seizures continue to be very difficult to control throughout childhood. Learning difficulties are very common and can range from mild to very severe, they usually persist and rarely improve. As the condition progresses most children become more unsteady (ataxic) on their feet. Children with Dravet syndrome will need to be cared for throughout their lives. On top of this, current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections.
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