Reporting on the recent seizure suffered by U.S. Supreme Court Chief Justice John Roberts, while fairly comprehensive, ultimately failed to drill down on the severely underreported issue of seizure disorders and their effects on both the sufferer and society at large.
There are overarching social complications and even stigmas that often confront those with seizure disorders. There are approximately 2.7 million people in the United States who have epilepsy — 315,000 of them are children.
Epilepsy is part of a sphere of challenging disabilities such as autism, cerebral palsy and traumatic brain injury (TBI) that require continued care, monitoring and community integration efforts; absent this, sufferers often struggle to reassimilate into society and can present anger management or substance abuse issues that are difficult to control or absorb.
Many people have seen the remarkable comeback that ABC's Bob Woodruff made after he was gravely injured in a roadside bomb attack in Iraq in 2005. Woodruff was at one point in a coma, and like many who suffer from TBI, he had to re-learn basic skills such as recognizing loved ones, speaking cogently, reading, writing, and the like.
Woodruff is a hero to many, both for his courage in recovery as well as using his position to shed light on an issue that challenges hundreds of thousands of families on a yearly basis who have never been exposed to such difficulties, or where to acquire the necessary educational tools to begin addressing them.
Traumatic brain injury — along with epilepsy, cerebral palsy and the like – exacts a significant toll from both the victim and, often, those around the victim. According to the Center for Disease Control and Prevention, at least 1.4 million Americans sustain a traumatic brain injury each year.
TBI can lead to problems ranging from balance and coordination deficits to loss of vision, hearing or speech, in addition to said inclinations toward anger, violence and struggles with substance abuse.
Medication for TBI is limited in what it can provide in the way of productive relief, whereas in the area of epilepsy, medication helps control seizures in about 70 to 80 percent of those who suffer from it. People with epilepsy for whom medication isn't effective often face an uphill battle of trying new drugs or surgery that offers few guarantees of sustained progress.
Further, victims of developmental disabilities like epilepsy often require continued independent living skills training in order to help them again become independent in their living environment. Such training can be as rudimentary as how to brush their teeth, change clothes, interact socially in a stable manner, or prepare a simple meal.
Justice Roberts seems, at least to date, to be one of the more fortunate ones to have endured a seizure disorder, this reportedly being his second episode in the past 14 years and not having caused disruption of the performance of his official duties as a Supreme Court Justice.
Hundreds of thousands of others across the United States are not as fortunate, and as it is important if not critical that there are community-based services available for those who suffer from these disabilities, it is also important that families, schools, churches and other community organizations be aware of the prevalence of these disorders, and what to do if confronted with a friend or loved one suffering from them.Janice Gay is the founder and executive Director of the Epilepsy Society of Southern New York