This is a republication of my article on June 2, 2000. Somehow the original was deleted when I was trying to add graphics.
ATTN: President Bill Clinton RE: Epilepsy Funding: Responsibility to America's Disabled
I am an ordinary woman with a misunderstood, unpopular disorder called epilepsy. I'm a President of a different nature heading a small but proactive, grassroots organization called The Epilepsy Connection. This disabled woman with epilepsy obtains no salary for her community service. Although 15% of those with seizure disorders are cognitively impaired, I press on with an uncanny ability to tolerate high doses of anticonvulsants, not impairing my ability to make changes in the disability arena. I've cried the tears of a child with seizures from insults, felt my independence stripped in adolescenthood, and as an adult my chances are promising I'll be uncontrolled for life. Medical science could change that fact and you affect that. I'm the one in 200 who has epilepsy, I'm vaguely understood, I'm feared, and few have compassion for me. Why has epilepsy managed to rate a "zero" in the funding department? Federal funding is horrendously less than for disorders of comparable severity. Epilepsy rated among the lowest in terms of dollars invested to find a way to manage it. 3 million stroke victims rated $71 million dollars. The 2.5 million with epilepsy, taking into consideration 600,000 who were uncontrolled wasn't evidence of the need. Epilepsy research brought in $54 million dollars in the fiscal year 1995. That is a dribble in the empty bucket called epilepsy research. Job applications need not be filled in fear. Society is the culprit and they must alter their corrupt views. Lurking "out of our dark corners" happens when public awareness and role models remove stigmas. Dollars assigned to epilepsy management proves you value its importance. The scar on my brain is permanent but medical discoveries to control my seizure frequency improve with support. History illustrates progress. HIV petrified us with fear. We were afraid to touch anyone affected. A decade transformed untouchable recluses to human beings led by noteworthy people like Elizabeth Taylor. Anyone can acquire epilepsy at any age and many die yearly. It remains a low national health priority and I'd like you to explain. Chronic, life-long disabilities must have equal the validity that we assign the known fatal variety. Epilepsy CAN be fatal. It kills. A person with epilepsy is more than twice as likely to die at any given age as a "normal" individual; accidents cause up to 16% of deaths. Uncontrolled epilepsy sufferers facing the sparse funds for research suffer a slow death because of the guilt, isolation, dependency, depression and visits to the emergency room. They will likely live out their life span, unless a seizure accident cuts it short. They feel pain daily with little optimism. Hope is bought with billions of research dollars.
