Did you know that one in 26 people will develop epilepsy in their lifetime? 500 new cases of epilepsy are diagnosed every day in the United States. In fact, epilepsy is more common than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. In over 40% of patients with epilepsy, seizures can not be controlled or are only partially controlled with treatment. Still, federal dollars spent on epilepsy research are significantly less than other neurologic disorders.
Although epilepsy is astoundingly common and strikingly prevalent, I am surprised every day about how uncommon it is for people to talk about epilepsy and how much stigma is still associated with this disease. As both a pediatrician and a patient with intractable epilepsy, I have spent years with one foot in both worlds — straddling the medical understanding of seizures and development with my personal experience with constant uncertainty and fear. I have tried to wrap my academic understanding of epilepsy around my professional unwillingness to acknowledge that I am also vulnerable.
This blog is designed to both raise awareness about epilepsy and share our epilepsy stories with others. Every post will be the story of someone new who has lived with epilepsy and how it has affected them. It is my hope that by spreading the word and sharing our experiences, we can spread hope and raise awareness.
Inspired? Please read a post and pass it on. Perhaps the retelling of many small experiences can start a tide of change.
If you’d like to share your story, please contact me at seaborg@wisc.edu
Epilepsy facts courtesy of Citizens United for Research in Epilepsy. http://www.cureepilepsy.org
I am glad I found your blog. Thank you for taking time to open a new discussion and raise awareness of the effect epilepsy has on lives.