5 posts tagged “Epilepsy Awareness Month”

Epilepsy Awareness Month: The value in helping others

Posted November 6th, 2015 by

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy.

Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains:

“I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve made it my passion to share my story and resources with others who are suffering and/or know someone who is suffering from uncontrollable seizures and epilepsy.”

But Letitia is not alone in her experience with other members of the epilepsy community, and there are many PatientsLikeMe members who understand the value in connecting with and learning from others who understand what they’re going through.

 “Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!” – Becky (Rebelor), also a member of our 2014-2015 Team of Advisors, who is living with epilepsy.

“I joined [PatientsLikeMe] because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me.” – PatientsLikeMe epilepsy member

“I wish I had found [PatientsLikeMe] years ago. It could have been a huge help to me during the worst years. My seizures are now controlled using a mixture of medications. Now I hope to help people who are still in those dark times.” – PatientsLikeMe epilepsy member

Are you living with epilepsy? During the month of November – and year-around – check out what the Epilepsy Foundation is doing to promote epilepsy awareness and help those living with epilepsy.

You can also connect with more than 9,800 others like you on PatientsLikeMe, and share experiences with more than 10,800 others in the epilepsy forum.

Share this post on Twitter and help spread the word.


Get “Seizure Smart” for Epilepsy Awareness Month

Posted November 10th, 2011 by

Click Here to Take the Seven-Question Quiz and Get Your "Seizure Smart" Completion Certificate

What does it mean to be “seizure smart”?  It means being knowledgeable about how to help in the event that someone has a seizure in your presence.  Given that one in 100 Americans has epilepsy – and one in 10 adults will have a seizure sometime during their life – this type of basic seizure first aid could help save someone’s life at work, at a restaurant or just walking down the street.

In honor of Epilepsy Awareness Month, the National Epilepsy Foundation has created a short interactive quiz that helps you become “seizure smart.”  The goal is to get five million Americans to take and distribute the quiz.  Once you’ve gotten “seizure smart,” you can then help raise awareness and proudly post your completion certificate on Facebook for everyone to see.

Got an affinity for posting things on Facebook anyway?  You’re the perfect candidate for the Get Seizure Smart Photo Contest.  Categories include “Funniest or Silliest,” “Most Impactful,” “Best Animal” and more.  All photos must be submitted by November 30th at 3 p.m. EST.  Learn about other Epilepsy Awareness Month activities taking place each day of the month here.

At PatientsLikeMe, we have 4,456 patients who report having epilepsy, with 71% of them female and 29% of them male.  Some of the most commonly reported symptoms include excessive daytime sleepiness, headaches and memory problems, while some of the most commonly reported treatments include Levetiracetam (Keppra), Lamotrigine (Lamictal) and Topiramate (Topamax).  (Click the links for each of these anticonvulsant medications to read hundreds of treatment evaluations submitted by our patients, who share their experiences with dosages, side effects, efficacy, costs and more.)

If you have epilepsy, join our growing community to share treatment data, support and advice with those who can relate.  For everyone else, get “seizure smart” and help make a difference today – and quite possibly in the future.