3 posts tagged “National Epilepsy Awareness Month”

What’s your epilepsy story?

Posted November 3rd, 2014 by

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition.

What are three things you need to know about epilepsy? 1

  • It’s a condition that affects the nervous system and causes seizures
  • A seizure is a disruption of the electrical signals between brain cells (neurons)
  • People are diagnosed with epilepsy after they experience two or more unexplained seizures separated by at least 24 hours

Epilepsy affects about 50 million people around the world, including over 2 million in the United States alone.2 3 Although there is no cure for epilepsy, seizures can be managed and suppressed through medications, non-medication treatments such as vagus nerve stimulation, or surgery.4 5 6

To help raise awareness this month, the Epilepsy Foundation of America (EFA) has organized a series of short online videos that feature people from all over the U.S. sharing their experiences with epilepsy. Watch one of them below and check out the rest on the EFA’s “Story Days” campaign page.

 

Los Angeles

Don’t forget to check out Letitia’s video, too – she’s a PatientsLikeMe member who has been living seizure-free after she learned about an epileptologist through her community. And if you’ve been diagnosed, reach out to the more than 9,000 PatientsLikeMe members living with epilepsy.

Share this post on Twitter and help spread the word for psoriasis.


1 http://www.epilepsy.com/learn/about-epilepsy-basics

2 http://www.who.int/mediacentre/factsheets/fs999/en/

3 http://www.cdc.gov/epilepsy/basics/fast_facts.htm

4 http://www.uptodate.com/contents/overview-of-the-management-of-epilepsy-in-adults?source=search_result&search=epilepsy&selectedTitle=3~150

5 http://www.uptodate.com/contents/evaluation-and-management-of-drug-resistant-epilepsy?source=see_link

6 http://emedicine.medscape.com/article/1184846-treatment#aw2aab6b6b2


Raising awareness for epilepsy in many different ways

Posted November 7th, 2013 by

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

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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

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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.

Check out their website to learn more about epilepsy and what you can do to help raise awareness during National Epilepsy Awareness month.

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.

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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…

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 newsadd 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.”


1http://www.epilepsyfoundation.org/aboutepilepsy/