“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible.  When Jake was first diagnosed, we didn’t know that.  Now I know that…and that we’re not alone.”

- Actor Greg Grunberg, father of a 16-year-old with epilepsy

When it comes to epilepsy, what do you know now that you wish you knew sooner?

That’s the question the Epilepsy Foundation is asking epilepsy patients and their families to ponder during National Epilepsy Awareness Month, which takes place every November. Share your struggles and successes in a video submission to the “Now I Know” campaign. Visitors to Epilepsy Foundation’s Facebook page will then have to the opportunity to vote on their favorites and share top videos with their social networks.  Ultimately, the top vote getters in each of four regions will win iPads and other prizes.

Affecting more than two million Americans, epilepsy is defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  When a person has two or more unprovoked seizures – brief, strong surges of electrical activity affecting part or all of the brain that last anywhere from a few seconds to a few minutes – they are typically considered to have epilepsy.  Symptoms can range from convulsions and loss of consciousness to more subtle signs, such as lip smacking, blank stares and jerking movements in the arms and legs.

More than 7,000 PatientsLikeMe members are sharing their experiences with epilepsy, including their symptoms, treatments and more.  Using our Seizure Meter, members are also able to record their seizure history, including the type of seizure (e.g. clonic seizure, complex partial seizure, tonic-clonic seizure).  What are our members taking to control their epilepsy – and how well is it working?  Check out the hundreds of treatment evaluations submitted for common medications such as Keppra, Lamictal and Topamax and learn from others like you today.

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.

Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients.  In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community.

Did you know…

• You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
• You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
• Others in the community have indicated a causative comorbidity for their condition, such as:
  • Head injury (242 patients to date)
  • Brain tumor (70 patients to date)
  • Stroke (38 patients to date)
  • Encephalitis (34 patients to date)
• 543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
• Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”)
  • As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).

How are our members treating their condition?

• Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.
• The top procedure reported by our patients is vagus nerve stimulation (VNS).
• The most widely used prescription drugs reported by members are Levetiracetam (Keppra, Keppra XR), Lamotrigine (Lamictal, Lamictal XR) and Topiramate (Topamax, Topamax Sprinkle); the top 3 supplements are Folic Acid, Calcium plus Vitamin D, and Multivitamins.

What are their major symptoms?

• The 5 most common symptoms reported include: Memory problems, problems concentrating, fatigue, excessive daytime sleepiness (somnolence) and depressed mood.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Keppra, Lamictal, Vimpat and Topamax), as well as seizures, seizure triggers, driving, and doctors.
• Members share a lot about their experiences switching medications and managing side effects.
• Members motivate each other to make the most out of their doctor visits by encouraging you to ask certain questions and be proactive in seeking care.

What else do you know?  Learn and share with PatientsLikeMe today.

At PatientsLikeMe, we believe in getting to know the person, not just the patient.  To celebrate the launch of the new epilepsy community this week, we sat down (virtually) with 3-star member, Blueyedgoddez.  Here’s what she has to say about her experiences living with epilepsy:

	(PatientsLikeMe) First, welcome to the PatientsLikeMe epilepsy community!  Cool username, btw. How did you choose it?
	(Blueyedgoddez) I have blue eyes and I sometimes feel like a goddess, as silly as that may sound.  I don’t mean a goddess as in a rich snob or anything. I mean it like an earth child, that sort of thing.
	(PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?
	(Blueyedgoddez) I had seizures since infancy, however i was officially diagnosed at the age of six. When I was a child, it was difficult in certain ways. Mostly because I knew I could never enjoy certain things that children enjoy – i.e., video games (at that time the resolution of the games were too high, the graphics would induce seizures), rollercoasters, the gravatron (at the carnival), any type of flashing party lights, among other things. As an adult, it’s not that much easier. I can’t drive under no means because where I live you need to be seizure-free for 5 years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child. The people I work with tend to say I use my epilepsy not to do things. How could anyone say I use Epilepsy to my benefit?  To me it’s very hurtful. It makes no sense. Also one other thing that seems to bother me as an adult is having children. I was told it’s going to be very difficult. As you can see by now, it’s a journey having epilepsy. However, in the end, you learn to live, laugh and love – despite all your perils.
	(PatientsLikeMe) How does epilepsy impact your every day quality of life?
	(Blueyedgoddez) The disease in itself isn’t what really effects my day to day activities, however it’s more the side effects from the medication to treat my epilepsy. Everyday I’m bound with multiple side effects such as, fatigue, headaches, depression, anxiety, aches and pains, nausea, the list could go on. Some days I wake up fine, others not so fine. I have my good days and bad days.
	(PatientsLikeMe) What inspired you to join the PatientsLikeMe epilepsy community?
	(Blueyedgoddez) I joined 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, more or less. That’s why I’m here to be helped and to help others. I have a voice and I intend on using it.
	(PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!