3 0 obj stream To test the hypothesis that higher seizure burden in Dravet syndrome is associated with increased comorbidities and lower quality of life (QoL) in a large cohort of patients with Dravet syndrome and their caregivers in Europe. 2006) of the studied patients with Dravet syndrome who had their first seizure after a vaccination carried an SCN1A mutation. HRQOL in Dravet syndrome depends on a series of independent factors including seizure control, behavior, cognitive, and motor problems. Dravet syndrome exhibits a range of severities in terms of seizure frequency and comorbidities, 15 and there is evidence that in addition to the SCN1A phenotype, 5 the magnitude of cognitive and behavioural impairment in Dravet syndrome is related to seizure frequency. INTERPRETATION Patients with Dravet syndrome with the highest current seizure frequency suffer from more comorbidities and have a lower QoL. It is an analysis of an in-depth online survey posted in the DSF support group in 2016 covering comorbid health conditions, characteristics of the syndrome, and the top caregiver concerns. Epilepsy Behav. Seizure. Pediatr Neurol. Access to healthcare and prevalence of anxiety and depression in persons with epilepsy during the COVID-19 pandemic: A multicountry online survey. This site needs JavaScript to work properly. 2011).. Pediatr Neurol. �NQ g��wJ!�)0N��f�}1>�hB���H�B��^����8~��Oz�ը <> Method: zichtbare functie bij stichting Dravetsyndroom (voorzitter) en bij Dravet syndrome European Federation (vicevoorzitter) zoon neemt deel aan open label studie fenfluramine te Antwerpen. Optimizing the Diagnosis and Management of Dravet Syndrome: Recommendations From a North American Consensus Panel. 2018 Jan;60(1):63-72. doi: 10.1111/dmcn.13591. <> Disclosures Zogenix Research funding ... Review and update several comorbidities Gait Sleep GI issues Autonomic symptoms Cognition Behavior. The disease begins with a febrile stage, characterized by febrile seizures with otherwise normal development. Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey. <> Would you like email updates of new search results? Therefore, more effective antiepileptic treatments are needed. Dravet syndrome is a rare and lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Caregiver impact and health service use in high and low severity Dravet syndrome: A multinational cohort study. Cannabidiol is an approved anticonvulsive drug in the United States and Europe for seizures associated with Dravet syndrome in patients 2 years of age and older. Patients with a high current seizure burden have more comorbidities and lower quality of life. Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey. %PDF-1.7 The term dysautonomia covers a range of Issues including problems with temperature regulation, decreased sweating, fast heart rate (tachycardia), low blood pressure, fainting and dizziness, and sluggish digestion and blood circulation. Research for a cure offers patients and families hope for a better quality of life for their loved ones. ... 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