September 15 - October 15 celebrates National Hispanic Heritage Month - a month dedicated to celebrating the history and accomplishments of Hispanic people and those of Hispanic descent. More than 710,000 Hispanics live with epilepsy in the United States and a portion of those persons are living with a rare form of epilepsy.
Yet, despite its prevalence, many people in the Hispanic community do not fully understand epilepsy. Language and other healthcare barriers may lead to misperceptions about the disease. Further, these obstacles may contribute to discrimination, difficulty obtaining an accurate and timely diagnosis, and even failure to follow a seizure treatment plan. Often minority communities have less access to specialized epilepsy treatment and care as well.
To overcome language barriers that often prevent understanding, many epilepsy organizations offer content in Spanish. These bilingual resources provide Spanish-speaking people with vital information in their native language. This will better enable them to make important decisions about care and help them teach others about seizure recognition and first aid. Following are a list of epilepsy resources in Spanish from the Epilepsy Foundation, Rare Epilepsy Network members and others. If you are aware of other valued resources or to provide updates or correct errors, please contact: info@rareepilepsynetwork.org.
Epilepsy Foundation
General resources in Spanish including information on types of Epilepsy and Diagnosis are linked here.
#StaySafeSide seizure first aid initiative in Spanish: #PermanezcaSeguraDeLado. It provides simple steps to take and remember if someone is having a seizure.
Seizure First Aid Training Registration - including sessions in Spanish here.
Facebook Live in Spanish Las Crisis Epilépticas Difíciles de Controlar
Seizure Educational Materials here
Epilepsy Foundation Los Angeles here
Rare Epilepsy Network (REN), comprised of 70+ rare epilepsy disease-specific organizations, Spanish language resources include:
Brain Recovery Project:
Glut1 Deficiency Foundation:
Sindrome de Dravet Fundacion (Dravet Syndrome Foundation Spain)
SYNGAP Research Fund:
Fondo de Investigación SynGAP - Orlando Carreño, MD
El ABA y su Contribution a la Sustraccion de Servicios para el Desarrollo de Habilidades - Carolos A. Zuluaga, MS, BCBA
Fondo de Investigación SynGAP - Marcelo Coba, PhD - #SRFCC1
Fondo de Investigación SynGAP - Marta Dahiya, MD - Ciitizen & SRF #SRFCC1
Fondo de Investigación SynGAP - Victoria Arteaga, MBA
Congreso internacional en español para conocer el síndrome Syngap1 - Telemedellín
Resources About Lennox-Gastaut Syndrome (kindly provided by Christina SanInocencio from the LGS Foundation)
Additionally, thanks to REN Member Elana Cardenal, (Dravet Syndrome Foundation Spain) we have also compiled websites with resources for additional rare epilepsy organizations (many HQ in Spain) with Spanish language materials:
A 24/7 Spanish Language Helpline is also available: 1-866-748-8008
If you are aware of other valued resources or to provide updates or correct errors, please contact: info@rareepilepsynetwork.org.
Disclaimer: All resources are provided as a courtesy. We are not endorsing any organizations or providing medical advice.
With Gratitude to Emily Owens, Class of ‘24, Walt Whitman High School, Bethesda Maryland for consolidation and editing. Sincere appreciation for translation provided by Mary Saldivar, Central Texas Manager, Epilepsy Foundation Central & South Texas.