Taking the First Steps
We are here for you
We want you to know you’re not alone. The mission of the Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. We help you do that by addressing the challenges of living with Dravet syndrome through a variety of resources and support options, including:
- 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.
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 Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge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.
We encourage you to approach the diagnosis of Dravet syndrome with anticipatory optimism: understand the potential complications that can be encountered under the diagnosis of Dravet syndrome so that you are prepared with proper interventions when necessary. Even within the diagnosis of Dravet syndrome, there is a spectrum of variation in the presence and severity of symptoms and comorbities. Remember every patient is unique and comparisons can be hard to make even when two individuals have an identical mutation.
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 loved one is on the right medications, seeing the correct specialists, and receiving appropriate therapies and care to guarantee the best quality of life.
Newly Diagnosed Resources
The DSF Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs. Sign up below to be a part of this patient family community and to stay up to date on new advocacy resources, clinical trials, and educational and fundraising events.
The kit includes DSF’s guide for newly diagnosed families, as well as a medication bag and other materials to assure that families new to this diagnosis have the tools and resources they need for their child’s care.
Consult with a neurologist who is experienced in treating Dravet syndrome to establish a protocol that deals with the intricacies of this syndrome and how it impacts your child.
There are medical centers across the U.S. that offer multidisciplinary care for the treatment of Dravet syndrome.
A Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on the patient’s medical history.
Keep a seizure diary where you record seizures along with other relevant information, such as dietary changes, timing of medication, amount and quality of sleep, etc.
Find Information about available clinical trials and other treatments in the pipeline for Dravet syndrome
There is nothing more powerful than the patient voice! By telling compelling stories and sharing the patient and family experience, we can share the many struggles that our patient community faces. DSF hosts webinars about How to Share Your Stories on Social Media and Effective Storytelling Techniques