Friday, August 12, 2011

Epilepsy: Social and Economic Ramifications

What better week to discuss social and economic turmoil! The stock market has had more ups and downs than the Giant Dipper in Santa Cruz (I don’t even want to look at my 401(k) right now), the rioting in London was pretty darn scary and congress is acting like a bunch of preschoolers fighting over the last cracker at snack time (and giving preschoolers a bad name in the process!).

The big picture seems a bit grim but I have to believe things will turn around and people will again regain their sanity and stop looting and rioting, the market will regain stability, congress may even start to work together out of necessity (and the threat of being voted out). Heck, the housing market may even improve. (Hey, I can dream).

While the world seems to go mad on a large scale, there are people on an individual level continuing to do the best they can to manage their own crises and daily lives. People caring for their disabled or elderly spouse, parent or other loved one cannot stop doing so because the stock market took a dive or congress is squabbling. It might actually create extra stress, however, because caring for a disabled or elderly family member is not only hard work, it is expensive.

Any chronic illness or disability has serious economic and social ramifications. Epilepsy is no different.

Even people with well controlled seizures may have problems holding a job. A person may only have a seizure once or twice a month but, at this rate, the person with epilepsy will not be allowed to drive, could be deemed to have an attendance (or tardiness) issue at work and be dismissed. (Fortunately, the Americans with Disability Act, enacted only as recently as 1990, protects persons with disabilities from discrimination in employment, access to transportation as well as access to state and local government programs.). Even with this protection, people living with uncontrolled epilepsy (estimated at 30% of those with epilepsy) will find it difficult to find and keep a job.

Anti-seizure medications may affect a person’s memory and ability to function not only at a job but in school as well. An advanced education may be out of reach for much of this portion of the population. Robert managed to get through high school (with great effort and much to the relief of our mom) and was even able to take some courses at a community college but because of the effects of the seizures and medications, he was unable to complete an advanced degree. (He still believes he has a “BA in Psychology” which had been an important goal of his.).

Epilepsy itself is associated with a higher rate of depression than other chronic conditions and tends to be more severe. Sadly, the incidence of suicide is also high in people with epilepsy. The reasons for this could be the side-effect of medications, the area in the brain affected by the seizures could be causing the behavior problems, or, people may not being able to deal with the social stigma associated with epilepsy and seizures. Epilepsy can be a very socially isolating disorder.

People fear seizures and, consequently, those who have them.

I will share with you that Robert’s doctors have tried numerous medications through the years but he has experienced depression, suicidal thoughts (as a teenager) and extreme anger and aggression at times. Fortunately, he is no longer on the medications which caused these behaviors but he does still have occasional angry outbursts or periods of extreme stubbornness (although, I can be pretty stubborn too but don’t have anything to blame it on!).

The economic ramifications can also be profound. Robert has never worked (nor has he been able to obtain health insurance) and so relies on government healthcare and disability in order to cover the numerous tests, surgery, medications and doctor visits necessary for him. I know how broke the government is these days but also realize the exorbitant costs of Robert’s medical needs and there is no way we could cover these costs. Robert is lucky to have family to help support him with his daily living needs since government assistance is not enough to cover “luxury” items (like new jeans when he gains or loses weight). Others may not be so lucky.

The outlook for people with epilepsy in developing countries is even more grim. According to the World Health Organization, 50 million people worldwide have epilepsy and three out of four of those people receive no treatment at all. The social stigma varies from country to country but even in the United States up until the 1970s, it was legal to deny people with seizures access to restaurants, theaters and recreational centers. In the United Kingdom, a law prohibiting people with epilepsy from marrying was in effect until 1970. Up until early into the last century, people were thought to be possessed by demons if they had a seizure!

There is hope! Education is the key to understanding and accepting epilepsy. Advocacy plays a huge part in effectuating change (did you know the Chair of the Board of Directors of the Epilepsy Foundation has epilepsy?). My hope is that together with increased awareness, education and advocacy we will reduce fear of seizures, stop the isolation of the person living with epilepsy and perhaps increase access to treatment for those unable to obtain it now.

Do you want to learn more about epilepsy? Please see previous posts in this series including What is It and Can I Catch It?  Seizures – How to HelpHow is Epilepsy Treated? and Living with Epilepsy.

I appreciate you taking the time to learn about epilepsy and ask you to spread the word about this common, yet misunderstood, disorder. The facts may be depressing but the more we learn about epilepsy, the more money we find to fund research studies, the better this disease will be understood and managed.

Do you have anything else you’d like to know about epilepsy? Do you have information to share about this disease?

(I promise a more upbeat post tomorrow).

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