Jan 24, 2007

Running out Epilepsy. My greater purpose in running.

There is not a running charity program for the Epilepsy Foundation of America, so I am starting my own!

Here is to the birth of Running Out Epilepsy. And here is to many more years of being siezure free!

I have set up a webpage to collect donations for the Epilepsy Foundation of America. The page tells a little bit about my story, and why it is so important to raise funds for the foundation and to advocate on behalf of all people with epilepsy.

Mine is but one of many stories of people who have discovered that they have it and never knew it until things got bad. I have AIWS, which is a rare but very very mild form of temporal lobe epilepsy. I am siezure free and able to go about my life normally, but many are not.

On this site you can donate money or read a little more. I also started a new blog - Run out Epilepsy to help spread the word. We are surely talking about grassroots here!

Thank you all for your support and positive comments!


Unknown said...

OH WOW! I did not know. Well, I am also someone who used to have seizures myself - LONG time ago. I had Petit-Mal epilipsy until the age of 8 when I finally outgrew them and went off of my meds. I went into the doctor every year until the age of 15 when I was given the all clear.

Jenniferlyn said...

Yeah, I had a really hard time with it - by myself I have what are called psychic seizures. AIWS more specifically - Alice In Wonderland Syndrome. Cute name for a crappy syndrome!

I do not have grand mals (which everyone typically thinks of when they hear "seizure"). No shaking - just visual and sensory difficulties. Always happens at nighttime prior to sleep. Well -happened at least! The meds have helped, and I am contemplating trying to ween off to see if I am better or not! 1.5 years seizure free!

Anonymous said...

ok...so...i've had this weird thing happen to me...where everything starts moving in fastforward and slow motion...everything i do...or say. So i decided to google it and this AIWS came up. Soo..what your saying is its a seizure? I'm having seizures?!