Dravet Syndrome Foundation Offers ‘Newly Diagnosed Patient Kits’
There’s a new, free informational resource available for the families of children in the U.S. who have been newly diagnosed with Dravet syndrome.
The Dravet Syndrome Foundation has created what it calls “Newly Diagnosed Patient Kits,” which include tools and materials for care management. To get the kits, families must enroll in the DSF Family Network, which connects Dravet families and provides information and resources.
“When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin,” the foundation states on its website.
Many people first turn to the internet — but the lack of current, relevant information available about the rare disorder can prove frustrating, according to the DSF.
“With a rare disease such as Dravet syndrome, general information you may find can be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of the therapeutic interventions and knowledge that we have available today,” the website states.
The foundation also noted the importance of knowing that the kit’s disease information is accurate and reliable, particularly where future medical decisions may be concerned.
The patient kits include a printed guide for navigating Dravet, a medication bag, and other materials. DSF Family Network registrants also will gain access to the organization’s parent support groups and family advocacy programs.
In addition to the patient kit, families are encouraged to check out the foundation’s webpage for families who live with a newly diagnosed child. It includes resources such as educational webinars, brochures and videos, and programs for entire families as well as for patients’ siblings.
“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,” the foundation also stated.
“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.”
Accurate diagnoses of Dravet, a rare type of epilepsy, are usually slow in coming because symptoms progress over time. Initial diagnoses depend largely on the patient’s medical history. Following accurate diagnoses, patients require constant care and supervision that extends throughout adulthood.
The patient kits will start families on their journey with reliable resources, the found said.
Educational grants from Greenwich Biosciences, Biocodex, and Zogenix are funding the costs of the patient kits.