Rep. Rogers Introduces Legislation To Establish 'Dravet Syndrome Awareness Day'
Rare epilepsy has debilitating effects on infants
September 20, 2013
 
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COLUMBUS – State Rep. John Rogers (D-Mentor-on-the-Lake) introduced legislation this week to mark October 16 as Dravet Syndrome Awareness Day. Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Many infants with Dravet syndrome have upwards of 30-50 prolonged seizures on a daily basis, which can cause developmental delays, movement and balance issues, delayed speech, sleeping difficulties and other disruptions to the central nervous system.


“I have personally seen the debilitating effects this disease has on children. I have been fortunate enough to know a courageous young girl who has been battling Dravet syndrome her whole life,” said Rep. Rogers. “Her struggle inspired me to pursue this legislation in hopes of bringing greater attention to this severe affliction and spurring serious dialogue about developing treatment options and one day perhaps discovering a cure.”


Unfortunately there is no cure for this disease that will affect many individuals for the rest of their lives. Treatment options for those with Dravet syndrome are very limited and most patients require constant care to assure their safety due to the unpredictability of seizures. 

 
 
 
  
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