When Dravet syndrome (DS) was first discovered by Dr. Charlotte Dravet in 1978, there was not a clear understanding of the expected lifespan for someone diagnosed with DS. Earlier diagnosis and advances in treatment have improved the prognosis and life expectancy of DS, meaning that more than 80% of patients will survive beyond the age of 20 years. As a result, DSF recognizes the need to increase awareness, education, and opportunities for this portion of our population.
One of the biggest challenges faced by our adult patient community is a shortage of medical professionals that understands the unique challenges faced by adults that may not be seen in pediatric patients. Patients often suffer multiple comorbidities in addition to persistent seizures, including but not limited to cognitive disabilities, behavioral challenges, decreased mobility, sleep issues, and gastrointestinal issues. Different therapeutic approaches may be needed as the patient ages and new or increased care may be required.
More pediatric-to-adult medical transition clinics are desperately needed to transfer care from a pediatric provider to a knowledgeable adult neurologist who understands the complexities of care for patients with Dravet syndrome. In addition to appropriate medical care, there are many other planning needs of our adult patient community families, transitioning from school to adulthood and creating a plan for lifelong care DSF recently developed some new worksheets to help families begin to think about what long term planning for their loved ones care might look like.
The challenges are plentiful. DSF has multiple resources for families and healthcare professionals and seeks to better define and understand the adult patient experience and needs. But, we know there is still work to do. Let us know what information and tools would be helpful for you to help us guide our further planning and resource development by emailing us at firstname.lastname@example.org.
Current DSF Resources for Families of Adults
- Creating a Long Term Care Team (worksheet)
- Developing a Lifelong Support Network (worksheet)
- Transitioning from School to Adulthood Planning Guide (worksheet)
- Dravet Syndrome in Adult Patients (webinar)
- Transitioning from Pediatric to Adult Care (webinar)
- Daily Life After Transition to Adulthood for Patients with Dravet Syndrome (webinar)
- What Do We Mean When We Say Transition? (webinar)
- Resources for Transition of Care from Parent to Sibling or Other Provider (webinar)
- Long Term Adult Care Workshop: Daily Life After High School (webinar)
- Long Term Adult Care Workshop: Creating a Lifelong Support Network (webinar)