November is often seen as a month of transition – autumn gives way to winter, the holiday season fires up, and our short sleeves disappear for warm coats and sweaters. And as many of you know, November is also National Epilepsy Awareness Month. Many different organizations focus on epilepsy throughout the year, but this November, we’re all transitioning into high gear to raise even more awareness about epilepsy.
The straight facts:
- Epilepsy currently affects 2.2 million people in the United States (and more than 60 million people worldwide)
- The condition is the fourth most common neurological condition in the United States
- More than 570,000 adults age 65 or older are living with epilepsy, along with 300,000 children under the age of 15 in the United States1
Thanksgiving isn’t the only important day in November
This whole month is dedicated to sharing experiences and learning about epilepsy, but on November 7th, the Epilepsy Foundation is teaming up with Disneyland to host the first annual “Epilepsy Awareness Day at Disneyland Resort” in southern California. Children and parents living with epilepsy will get a chance to enjoy a fun-filled, stress-free day at Disneyland, and a portion of all tickets sold will be donated to helping everyone who has epilepsy.
Over 30 organizations are teaming up to help make Epilepsy Awareness Day a reality, and the sold-out event promises to stomp out epilepsy stigmas while children have a ton of fun.
Today, the events at Disneyland are a part of a global effort to improve the lives of epilepsy patients, together, all through swapping stories and sharing knowledge.
Getting to know the Epilepsy Foundation
The Epilepsy Foundation (EF) was established in 1967, and for over 45 years, the organization has been striving for change and working hard to assist the more than 2 million Americans living with epilepsy.
Besides the partnership on National Epilepsy Day with Disneyland, some of the EF’s innovative programs include the Jeanne A. Carpenter Epilepsy Legal Defense Fund and the H.O.P.E. (Helping Other People with Epilepsy) Mentoring Program.
Thanks for sharing
The members of the epilepsy community on PatientsLikeMe aren’t just raising awareness in November, they’re doing it all year long by participating in real-time research.
Recently, they took part in a rescue medication study that PatientsLikeMe and Acorda® Therapeutics partnered up on. And on behalf of the awesome epilepsy community helping to reach our survey goal, PatientsLikeMe made a donation of $2,500 to the Epilepsy Foundation. So what did everyone say about rescue meds and epilepsy?
- Nearly half of respondents (41%) said that in the past year, they have had multiple seizures within 24 hours despite taking daily anti-seizure medication
- Almost half (45%) reported that they would not have access to medication that would stop a seizure
- Three out of four respondents said they have never discussed rescue medications with their doctors
- Check out all the results here
Phew! There really is a lot going on for Epilepsy Awareness Month. Not sure where to start? You can…
- Donate to support the cause
- Write your own In My Own Words piece or create a Heroes Among Us page
- Speak Up, Speak Out about epilepsy by contacting your representatives in Congress
- Share your stories to help others like you on PatientsLikeMe
There are more than 8,000 members of our epilepsy community – all are raising awareness by sharing their real-world experiences through research, surveys and the community forums. The topic could be anything from seizures to epilepsy treatment news – add your voice and join the conversation today.
Letitia’s story and the patient voice
Say hi to Letitia. She’s been living with epilepsy since she was 10 years old, and she’s been a PatientsLikeMe member for over three years. As we all share our stories to help raise awareness, check out what she has to say in this video about how the members at PatientsLikeMe changed her life.
“I feel like PatientsLikeMe changed my life because it gave me a lot of the answers that I’ve been searching for all of these years…without PatientsLikeMe I probably would have never found out about an epileptologist.”