To The Daily Sun,
I have written this letter to let people know that November was Epilepsy Awareness Month. I am hoping to draw attention to this debilitating illness and raise awareness.
Throughout history there has not been enough serious research toward epilepsy, and without research there can be no breakthroughs, not to mention a cure. Just because you can't see epilepsy it exists, lurking invisibly, causing irrefutable damage. Today, the stigma for people with epilepsy is that you are strange, dangerous, weird, and someone to avoid. Here are a few facts:
— Epilepsy is the fourth most common neurological disorder in the U.S., after migraine, stroke, and Alzheimer's disease. Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined. More people die from epilepsy than from breast cancer. There are 200,000 new cases each year. Up to 50,000 Americans die each year from seizures and related causes, including drowning and other accidents of epilepsy each year, and a total of more than 3 million Americans are affected by it. By some estimates, the mortality rate for people with epilepsy is two to three times higher — and the risk of sudden death is 24 times greater — than that of the general population.
— The vast majority of cases are children, most of them experiencing their first symptoms before the age of 18. However, between 1 and 3 percent of the population will develop some form of epilepsy before age 75. There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries.
I happen to be in the 1 to 3 percent category. My adult onset epilepsy became quite evident just after I turned 47 years old. It is thought now that it was coming on for a couple of years, but manifested when I had several grand mal seizures in February 2014. I have been living with the disease since, about a year and a half now. It is one of the greatest challenges, if not the toughest, I have had to face in my life.
Epilepsy is not a choice — it is a serious illness/disease. That is why I am offended by some people who are unable to make good choices and given generous resources at the taxpayers' expense. The "Heroin Epidemic" is getting headlines and even one of our state senators is asking for $600 million to fight the "disease" as its being labeled. Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis).
In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.
Pharmaceutical investment in epilepsy is less than in Alzheimer's and Parkinson's, and it's expected to decline further over the next several years. The government invests $140 million-160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders. Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson's, by contrast, receives $40-$50 per patient from nonprofits. Yet per researcher, funding for epilepsy lags average funding for all diseases by nearly 50 percent. All these statistics were provided by the National Epilepsy Foundation.
In conclusion, I must admit, I am disappointed by the lack of public announcements to promote awareness and understanding of epilepsy last month. I hope someday I can get to a point where my condition is more stable so I can become more involved in raising awareness and helping fight the illness. I have also sent this letter to our state senators and have published it here for all state legislators to read as well. Hopefully, this will start a well needed conversation.
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