Miami Children’s Hospital: Battling Dravet Syndrome

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of epilepsy for which there is currently no cure. Seizures begin in the first year of life in an otherwise typically developing infant. Unless a cure or better treatments for Dravet syndrome is found, individuals with this disorder face a diminished quality of life. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

Recently, internationally recognized French psychiatrist and epileptologist, Charlotte Dravet, MD, (who first identified the disorder) spoke to families and physicians at Miami Children’s Hospital about Dravet syndrome. Patients also discussed treatment through Miami Children’s Hospital’s ‘Ion Channel Epilepsy Program’, one of the nation’s first comprehensive care programs for children with Dravet syndrome and other forms of ion channel epilepsy. Our goals in the production of this video was not only to generate awareness for Dravet syndrome but also hope for the children and families affected by this rare and devastating affliction.

 

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6 comments

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My 100 Favorite Posts of 2012 December 7, 2012 - 8:56 pm
[...] Miami Children’s Hospital – Battling Dravet Syndrome – If you follow Dan Perez at all you know he has done a lot [...]
Dravet Syndrome Foundation: "Norah's Story" | DanPerezFilms.com January 10, 2013 - 1:37 pm
[...] in 2010, I produced a video on Dravet syndrome for Miami Children's Hospital. Earlier this year, I was contacted by the Dravet [...]
Dravet Syndrome Foundation: "Andrew's Story" | DanPerezFilms.com January 13, 2013 - 12:04 pm
[...] in 2010, I produced a video on Dravet syndrome for Miami Children's Hospital. Earlier this year, I was contacted by the Dravet [...]
Dravet Syndrome Foundation: "Maddie's Story" | DanPerezFilms.com January 13, 2013 - 12:04 pm
[...] in 2010, I produced a video on Dravet syndrome for Miami Children's Hospital. Earlier this year, I was contacted by the Dravet [...]
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