When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin. Often your first instinct is to turn to the internet for more information. But with a rare disease such as Dravet syndrome, general information you may find can be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge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. It is also important to confirm that the information you have to help you make medical decisions is coming from an accurate and reliable source.
We want you to know that you are not alone. To help families find their footing on this medical journey, DSF has developed a Newly Diagnosed Patient Kit for patient families located in the U.S. When you register with the DSF Family Network, you will automatically have a kit shipped to you, which includes a printed guide for newly diagnosed families, as well as a medication bag and other materials to assure you have the tools and resources you need to properly manage your child’s care. By registering for the DSF Family Network, you also gain access to our private parent support groups and family advocacy programs.
In addition to the kit, we also offer a page on our website for the Newly Diagnosed, which includes:
- Information about Dravet syndrome including symptoms, diagnosis and treatment.
- Resources including brochures, educational webinars, and videos.
- Programs for families and siblings who also experience the effects of this diagnosis.
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.
We are able to offer these kits to families at no charge, thanks to unrestricted educational grants from Greenwich Biosciences, Biocodex, and Zogenix.