If you’re like me, you are so hungry to learn more about your Epilepsy. I can’t get enough data; online, in books, at conferences, from my doctors. In my more than seven years living with this disease, I’ve realized that not only do I gobble up information from my doctors and those various resources, but I’m taught by others who live each and every day with seizures. Yes, yes…Dr. Shah’s words of wisdom echo in my head, “Every person’s Epilepsy is different,” but truly, I believe we can learn from each other. How we combat drug side effects, how we recover from the toughest seizures, how we overcome the ‘no driving’ situation…it’s all incredibly helpful.

Today is a great day in that learning process. I know I sound like a TV commercial, but really, I’m so thrilled to tell you about the launch of a new website. It’s actually the newest ‘arm’ of an existing website, one that is crucial to those who live with other life-changing conditions and diseases:  http://www.patientslikeme.com/epilepsy/community

It’s brought to you by the drug company UCB, and http://wwwPatientsLikeMe.com, which is the leading online community for people with life-changing conditions. PatientsLikeMe works like this: you interact with other patients, share your experiences,  input your data, and all the while you are helping researchers learn how your disease, in this case, Epilepsy, acts in the real world. The hope is that the information gathered on this site will truly lead to the discovery of new and more effective treatments.

You can join for free, set up your profile (I did last night…trust me, it only takes a few minutes), and begin making friends and sharing your experiences. I’ve already chatted with someone–she’s a Mom, she’s a wife, AND she has a VNS, like me…imagine that, and her VNS is WORKING, just like mine.

PatientsLikeMe

 I know I will be talking much more about PatientsLikeMe in the weeks and months to come…So, give it a try today! Let’s give them all the information they want and need. Remember, the more we communicate, the faster they can gather data and who knows–perhaps in our lifetimes we can see a cure!