The Dravet Syndrome Foundation, in collaboration with the Lennox-Gastaut Syndrome Foundation and the Tuberous Sclerosis Alliance, announced last week that they have launched the Seizure Action Plan (SAP) Coalition to educate people with epilepsy, their caregivers, and healthcare professionals about seizure emergency rescue protocols and the importance of personalized seizure action plans. The SAP Coalition will lay the groundwork for a new awareness week beginning in 2021 to coincide with International Epilepsy Awareness Day on February 8, as well as a website with resources and a social media awareness campaign.
Many patients with a rare and catastrophic epilepsy syndrome such as Dravet syndrome (DS) experience frequent seizures and typically have poor seizure control. It is crucial that patients with DS have a custom seizure emergency plan in place for intervention with rescue medications to assure their safety and quality of life, particularly since it is not uncommon for these patients to experience status epilepticus (prolonged seizures), which can be life-threatening.
In a recent survey of our community (41 caregivers), we were surprised to learn that 20% of our respondents did not have a seizure emergency plan in place for their loved one with DS. This small survey illustrates the need for an increased awareness of what a seizure action plan is and its importance. For DS patients without a seizure emergency plan, I encourage you to work with your primary neurologist to develop a plan that assures appropriate care in a medical setting with healthcare professionals who may not be familiar with DS or the individual patient’s medical history. A seizure emergency plan also helps to guide educational professionals, therapists, caregivers, and others involved in the patient’s day-to-day care to assure an immediate and appropriate response can be taken to shorten the duration of a seizure or stop seizure clusters.
This coalition is so important for the entire epilepsy community, as even patients with well-controlled epilepsy can significantly benefit from seizure action plans in case they are at school, work or another setting where those around them may not be familiar with their condition.
We deeply appreciate the support of the Presenting Sponsor, Neurelis, Inc., and the Gold Sponsor, UCB, that allows this new coalition the opportunity to develop this initiative and raise awareness of seizure rescue plans and educate the community on their significance in optimal patient care. Individuals and organizations who would like to get involved in this effort can contact me for more information on next steps.
You can see the press release announcing the coalition here.