Patients, caregivers, and advocates around the U.S. will share educational information, host fundraisers, don purple gear, and add a special Facebook profile photo frame this November. All of these efforts are being done in the name of the one in 26 people diagnosed annually with epilepsy. More than 65 million individuals globally live with the central nervous system disorder, and of those, one-third experience uncontrollable seizures.
Also to mark the month, three nonprofit organizations are launching a coalition to educate people who have epilepsy, their caregivers, and healthcare professionals about seizure emergency rescue protocols and the importance of personalized seizure action plans.
Meanwhile, the Dravet Syndrome Foundation (DSF) is asking its community members and supporters to follow its social media channels and share its Awareness Month posts and videos. Those platforms include Facebook, Twitter, Instagram, YouTube, and LinkedIn.
The foundation also encourages parents of Dravet patients to share their child’s story for inclusion on its website and to share it on their social media platforms. Parents and advocates also are asked to print and share DSF’s educational brochures, available in both English and Spanish.
Another way to get involved is to wear DSF gear or any shade of purple — the color that officially represents epilepsy — and post a selfie on social media, explaining what the month personally means. There’s also a DSF Epilepsy Awareness Month frame that can be added to Facebook profile pictures.
In addition, supporters may register for the DSF’s virtual fundraising event, Dash for Dravet, and share their fundraising page throughout the month to garner support for the organization’s research and advocacy programs. The 5K event, in which participants may run, walk, or jog at their own pace and in their own neighborhood, will be launched on Thanksgiving, celebrated on Nov. 26 this year.
“Epilepsy is one of the least understood of all neurological diseases, and yet it is the fourth most common neurological condition in the U.S.,” the DSF states on its Awareness Month webpage. “…And, as the Dravet community knows all too well, epilepsy can be fatal. We need early diagnosis, more research, and better treatment options.”
The Lennox-Gastaut Syndrome Foundation also is using the month to raise awareness and support with its “Be a Voice” campaign. Supporters are encouraged to take to social media, wear t-shirts — available for purchase from the foundation — and illuminate their homes in purple. Families of LGS patients also can connect with each other in support groups.
In observance of the awareness month, the DSF, the LGS Foundation, and the Tuberous Sclerosis Alliance have partnered to get patients to develop seizure emergency plans. Such plans ensure that, if the need arises, immediate and appropriate action is taken to aid patients.
The Seizure Action Plan Coalition will provide a framework for a new awareness week next year that coincides with International Epilepsy Awareness Day on Feb. 8. On that date, advocates in more than 120 countries highlight the problems faced by people with epilepsy and the work that’s being done to treat the disorder. The coalition also will produce a website with resources, and a social media awareness campaign.
Experts note that people with severe forms of epilepsy, called developmental and epileptic encephalopathies (DEE), frequently experience uncontrollable seizures, which may contribute to severe cognitive and behavioral impairments starting at an early age.
“Patients with Dravet syndrome experience frequent, and often prolonged, seizures,” Mary Anne Meskis, executive director of the Dravet Foundation, said in a press release.
“Having a plan in place for intervention with rescue medications is crucial to assuring the safety and quality of life for our patient population and other DEEs,” Meskis said. “This new collaboration will allow a much-needed opportunity to educate healthcare professionals, caregivers, and the general community on what a rescue plan is and its significance in optimal patient care.”
For more information, write to Meskis at [email protected].