If you were to rate the severity of different types of epilepsy from one to 10, 10 being the most severe, Dravet syndrome would be an 11.
Dravet is catastrophic and begins during the baby’s first year of life.
The seizures these children experience are prolonged and occur with alarming frequency. So, it follows that because of constant seizures, developmental delays to speech and behavior are to be expected. In addition, Dravet syndrome causes balance issues, orthopedic problems, and chronic infections. And these aren’t all the hurdles a child with Dravet will face.
In addition, Dravet syndrome causes balance issues, orthopedic problems, and chronic infections. And unfortunately, these aren’t all the hurdles these children will face.
Right now, there is no cure, and treatment options are very limited—but one is shining the light of hope on future treatment. CBD (cannabidiol). I’m not talking about the cannabis people in Amsterdam smoke in cafes, I’m talking about medical grade cannabis that is turned into an oil and applied topically.
The results of the current clinical trial are astounding: participants experienced a marked reduction in the amount of seizures and the length of time they lasted.
It’s interesting to note CBD is approved to treat multiple sclerosis in 20 countries, but not the United States. Why is that? And how fast can we change the law? The
The Dravet Syndrome Foundation’s mission is to raise much-needed dollars for research. Between their efforts and the results of the current clinical trial, CBD may join the mainstream.
While that is their main focus, they also have a page that features real-life stories of children who are bravely living with this devastating condition. Their motto is “Raising Hope and Changing Lives Through Research.”
Has Dravet Syndrome affected a child in your life? Help us raise awareness about this rare disease by sharing your experience with Patient Worthy!