An overview of the NeurologyLive tweet chat honoring National Epilepsy Awareness Month, featuring highlighted contributions from the medical community.
On November 18, 2020, NeurologyLive partnered with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation, and the Tuberous Sclerosis Alliance for a chat on Twitter to discuss and raise awareness towards epilepsy, a disorder with many variations that affects nearly 3.5 million people each year.
Topics of the night included barriers in epilepsy care, recommended resources for patients with epilepsy and their caregivers, improving education on managing a patient’s daily activities, and how family members and siblings can help better understand an epileptic condition.
There was also an increased effort to discuss the role that advocacy organizations play within the community. That being said, all 3 of the previously mentioned co-hosts are leading advocacy groups whose drive to create change and raise awareness helped fuel the tweet chat idea.
Throughout the night, participants chimed in with responses while co-hosts of the chat provided helpful links and resources to the overall community.
When discussing the ways that we can better educate people on seizure first aid and how to handle a critical situation, Wendy Fry, director of Family and Caregiver Engagement, Dravet Syndrome Foundation, stressed the role schools can play in assisting this change.
The importance of advocacy organizations and the benefits they bring to patients with epilepsy was echoed through multiple tweets, including this thread from the TS Alliance. Embedded below, the TS Alliance provided a multitude of links and resources they offer patients with tuberous sclerosis complex.
Patients with epilepsy often face a number of barriers that can impede on their quality of life, including finding an expert suited for their needs. The Dravet Syndrome Foundation laid out the multi-step process when trying to find a doctor or institution that specializes in their rare disease.
NeurologyLive has been committed to contributing socially and raising awareness to neurological disorders and the impact they have on their communities. Stay on the lookout for future events and tweet chats that highlight these issues.
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