Our Nina passed away four years ago from Epilepsy (SUDEP). The
commitment of our government agencies to provide resources for research
into the causes and treatments, including the pharmaceutical and
psychosocial sides is a national disgrace.
There are 3,000,000 or more Americans with Epilepsy, 50,000 or
more die every year, SIX PEOPLE DIE EVERY HOUR OF EVERY DAY. Epilepsy is
not a disease which may come from a life style choice. In 70% of the
cases the cause is unknown. Yet the National Institutes of Health in 2014 spent less on epilepsy than on HIV/AIDS, Alcoholism, Breast Cancer, STD and Stroke. Epilepsy is woefully underfunded.
What about treatment? Your health care provider can medicate or
recommend surgery. Should anyone have any kind of accident
rehabilitation is easily available. For alcohoholism as well as for many
other conditions, there is rehabilitation. With epilepsy there are few
if any programs for the afflicted. It is a lonely and sometimes very
sad life for them.
What about the psychosocial side? What about the discrimination,
depression, isolation and lack of social skills. What about the fear
and the reporting requirements when looking for a job or while employed?
Once a seizure occurs the job is gone.
We have learned that few, if any, treatment programs exist for
the psychosocial aspects of Epilepsy in America, let alone in other
countries. Epilepsy is feared through ignorance, please help us spread
this letter to all your friends so empathy and understanding about this
disease can one and for all get the public support it deserves.
There is an urgent need for psychologists, psychiatrists, nurses
and social workers. Most learn "on the job", there is no money to
train and invite more doctors into the field. Simply there are not
enough people out there to help, and the resources are not coming
through health care. They MUST come from you!!!
MAYBE YOU WILL BE ANGRY TOO and decide to HELP.