Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions and unsure where to begin. Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge that we have available today.
Because Dravet syndrome is a rare disease, many medical professionals may not be as familiar with the disease as you will become, and we often hear of parents “educating” the professionals. As a complex medical condition, those with Dravet syndrome typically benefit most from a multidisciplinary care approach. We encourage you to learn all you can to make sure your child is on the right medications, seeing the correct specialists, and receiving appropriate therapies and care to guarantee the best quality of life.
Life is difficult with Dravet syndrome, but there is HOPE.