First things first…one week until we head for Washington DC for the National Walk for Epilepsy! There is still time if you’d like to get involved. You can even be a virtual walker!

The thousands of people who will gather on the National Mall next Saturday will more than likely either have Epilepsy, know someone with Epilepsy, or they care for someone with Epilepsy. But how about those who will be diagnosed just this year? Statistics show 200,000 people will be diagnosed in 2010. Those of us who live with the disease each day know what we are dealing with…but how about those ‘newbies’ to this life? What can we say to them?

If you come into contact with someone who has just received the diagnosis, chances are pretty good that he/she knows very little about Epilepsy. Here are some tips:

-You might want to give him some good contact information and reference guides. The Epilepsy Foundation of America is a primary one. CURE is also a very good site. Basic facts and figures are always needed when you first learn that you will most likely have to live with this neurological condition for a lifetime.

-Suggest that a good open dialog with your neurologist is key. An Epilepsy patient should be able to call on his/her neurologist whenever there is a question. Is the medication working to control seizures? Is surgery and option for me? What are some of my other treatment options (i.e. a Vagus Nerve Stimulator)?

-Help from and conversation with others who live with Epilepsy can also be of great help. This blog, also the Epilepsy Foundation’s e-communities site and Epilepsy.com can let you chat with others who live with the disease. But remember, EVERYONE’S seizures are different. If you react to an anti-seizure medication, someone else might be doing well on that same drug. If surgery is an option for one person, it might not be an option for you. Still, there is great help in counseling and conversing with those who share this journey and fight this fight.

-Get involved locally with your Epilepsy Foundation. It’s actually a great idea for the entire family of the newly diagnosed. They have great resources and wonderful volunteer opportunities. There are fabulous camps for youngsters with Epilepsy and great social outings. I am involved with the Epilepsy Foundation of Michigan, which serves more than 100,000 people with Epilepsy in our state. You can look up your nearest Foundation on the home page of the Epilepsy Foundation.  

-TAKE PART in fundraisers for our cause! It’s a great way to give back to the Epilepsy community!

A new diagnosis doesn’t have to be all too negative. You now know what has been causing your episodes and you hopefully have a specialist on your team. AND, you can reach out and connect with others who are living a similar life!