For some reason, I honestly don't know why, I have decided to write about my epileptic experiences through the eyes of Kurt Hummel. Why him out of all the characters? Chris Colfer. I should say Chris Colfer's sister, Hannah.
I read about Hannah Colfer's story about a month ago and reading about what Chris' mom does for Hannah really struck a chord with me. For me, my seizures onset when I was 14 years old and just under a week before my 15th birthday, I was diagnosed with Generalized Tonic-Clonic Epilepsy. The neurologists that I have seen for nearly the past 5 years have no idea what the causes of these seizures are and, with the cause remaining unknown, all we can do is treatment by medication.
I write this story in hopes that maybe awareness for Epilepsy is raised. For people like myself and Hannah Colfer, we need all the help that the people are willing to provide. Epilepsy research is underfunded and needs to be brought into a light that will allow researchers to do their jobs.
Here are some facts that may actually surprise you:
* Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.
* The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.
* It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.
* The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.
* Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer's disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
* Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
These are the things that most people will not tell you about Epilepsy.
If you wish to be better informed…check out these websites:
http: / www (dot) cureepilepsy (dot) org / home (dot) asp
http: / www (dot) epilepsyfoundation (dot) org / about /
http: / www (dot) ninds (dot) nih (dot) gov / disorders / epilepsy / detail _ epilepsy (dot) htm#toc
I did a research paper for my English class last semester (Fall 2010) and was astounded by the amount of information that these websites had.
I will hopefully have the first chapter out by the end of next week.
Love,
Jen