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My Life With Epilepsy

They run in my family. My cousin has them, my sister had them, I have them.

Seizures.

My first one was in sixth grade. Then two more in high school. Four more my freshman year in college. And nearly ten in the past two years.

Yes, I am one of the 50 million people around the world who suffer from epilepsy, a chronic non-communicable disorder of the brain. In the United States, nearly 3 million people live with epilepsy, making it the fourth most common neurological condition and more prevalent than cerebral palsy, multiple sclerosis, Parkinson’s disease and autism – combined. Although recognized by the World Health Organization as one of the world’s oldest medical conditions, compared to other non-communicable conditions like cancer and diabetes, epilepsy is seldom discussed and often ignored, thereby limiting awareness and knowledge about the disorder and enabling societal stigmas to flourish.

During the 17th century Salem witch trials, many of the women accused of witchcraft and burned alive are believed to have suffered from epilepsy and community members misinterpreted seizures as demonic possession. Up until the 1970s in America and the United Kingdom respectively, it was legal to deny people with epilepsy entrance to public buildings and to forbid people with epilepsy to marry. Today, in both China and India, epilepsy is still commonly regarded as a legitimate reason to prohibit marriages.

FullSizeRender (1)Growing up, I certainly felt the stigma – at least I perceived there to be a stigma. Looking back, it was probably all in my head. I hardly ever mentioned my disorder to anyone besides my close friends because I feared I would be labeled as “the girl who has seizures.” I didn’t want people to think differently of me, to pity me, to think I couldn’t when I knew I could. It was not until only two years ago that I finally went public about my condition, lifting a huge weight off my shoulders and raising nearly $1,500 for the Epilepsy Foundation’s Epilepsy Therapy Project to run the 2012 Philadelphia Marathon.

In addition to social stigmas, epilepsy also inflicts a wide array of physical and economic consequences ranging from an increased risk of fatal car accidents and dangerous head injuries from falling to a decreased likelihood of attending school or finding employment – a particularly hard hitting consequence for women and girls.

For women and girls in developing countries, those who already bear the brunt of social inequities, epilepsy only serves as an additional barrier to empowerment. By lacking access to medication and treatment, women and girls with epilepsy inevitably suffer an increased number of seizures. These continuous and uncontrollable seizures create a domino effect in which girls experience an even lower likelihood of attending school, thereby limiting employment opportunities further, and dooming women and girls to a lifetime of poverty.

Approximately 75 percent of people who suffer from epilepsy in developing countries fail to receive proper treatment due to anti-epileptic drugs’ (AEDs) inaccessibility, unavailability, and unaffordability – not to mention the condition’s severe social stigma. As a result, the mortality rate associated with epilepsy is much higher than in less impoverished nations. Although many cases of epilepsy (like mine) are simply a matter of genetics, the disorder can also be caused by brain damage stemming from birth complications (particularly affecting women without access trained midwives) and untreated brain infections (i.e. meningitis, encephalitis, neurocysticercosis), health problems more commonly found in developing regions. In fact, nearly 80 percent of epilepsy cases are found in developing regions. In Africa, nine out of ten people with epilepsy go untreated and that figure is even higher in India, where nearly 95 percent of people with epilepsy are left untreated.

Image c/o Tumblr
Image c/o Tumblr

For me, a major economic consequence was the growing hole in my bank account upon graduating from university. I no longer was covered by either my parents’ or school’s health insurance and my employer (a law firm) did not offer benefits. I needed to buy my own insurance – a task much harder than it sounds. In the days before the Affordable Care Act, insurers were allowed to discriminate against those with a ‘pre-existing condition’ and therefore, allowed to discriminate against me. As a high-risk client, private health insurance companies lacked the economic incentive to cover my health costs, causing the frantic search for adequate health insurance to drag on for weeks. Meanwhile, without insurance, I was forced to pay hundreds of dollars out-of-pocket every month in order to fill my prescription and, essentially, in order to live my life without a dangerously high risk for seizures.

However, I am one of the lucky ones. I am happy to say that I am now covered by a quality health insurance policy and have easy access to AEDs and neurologists. Had this not been the case, my life and my future would look completely different.

In the post-2015 agenda, all of us – global leaders, medical professionals, young and old, men and women – we must all raise a collective voice and shine a spotlight on the importance of ensuring access to proper healthcare for those living with epilepsy, particularly women and girls. For too long, neurological health has gone ignored in the global conversation. When 50 million people suffer from epilepsy, a population equivalent to that of South Korea, don’t you think it’s time we paid attention?

Learn more:

In the United States, November is National Epilepsy Awareness Month. Join the Epilepsy Foundation’s #DareTo campaign to spread awareness. Additionally, from November 10 – 14, join Devex’s #HealthyMeans digital rally and raise your voice about advancing the dialogue of the future challenges and opportunities in global health, particularly for those living with epilepsy.

Cover image c/o Flickr Creative Commons

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Category: Uncategorized
Tagged with: #HealthyMeans    brain    epilepsy    Global Health    Health    neurological health    neurology    non-communicable diseases    post2015    seizure

Elisabeth Epstein

Hi everyone! I recently earned my Master’s degree in International Development from The New School in New York City in May 2012. With a concentration in International Development and Global Health, I have worked behind the scenes as a Research Intern for the PBS documentary Half the Sky in addition to serving as the Research and Advocacy Intern for The Hunger Project. Globally, I have taught English to kindergartners in China, have researched clean water and HIV/AIDS in Kenya, and have gained first-hand experience understanding how migrants and refugees deal with public health issues in both Mexico and Thailand. I am especially interested in food security, nutrition and hunger and the role of women and girls in each of these issues. In my free time, I enjoy playing with my ever-so-fluffy Siberian Husky, eating delicious food, training for marathons and traveling. Follow me on Twitter @E_Epstein!

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  • Thank you for sharing your story, Elisabeth. You are an incredibly strong and beautiful woman xxx

    • Elisabeth Epstein

      Thanks June! 🙂

  • michael mazur

    When Big Pharma has a choice between finding a cure for something and finding a treatment for it, we know where the money is.

  • Thanks for sharing your story 🙂 It’s great people are raising awareness about epilepsy.

  • I’m 31, almost 32 and have been having grand mal seizures since I was about 17. Let me tell you, it sucks. I can usually tell when one is about to come. I become foggy and unable to concentrate. My hands and feet become real cold but sweaty. My stomach hurts and I feel nauseous but can’t throw up. I become extremely uncomfortable and fidgety. All of those feelings happen for about an hour or so before hand. It’s not the best experience. Even if take more medication when I feel one coming I’ll have one. —– At some point I gain consciousness after I don’t know how long with the worst headache and no memory whatsoever of what happened prior or minutes after an episode. Occasionally I’ll bite my tongue or cheek. I’ve tried almost every kind of epileptic medication and I still have breakthroughs. My long term memory is slowly deteriorating. There is nothing I can do except to spread love, pay it forward, and enjoy life while I am still able to. I am content and have accepted my future. When you notice someone having a seizure or about to have a seizure, try to put something soft under their head and stand back. Don’t hold them down. They will eventually snap out of it. that was how a friend ask me to email aishatheorginal for help , iam free now if you have lost hope now there is hope EMAIL . aishatheorginal for your help or call +2348148345303 there is hope now friend

  • Chris

    Researchers from Krishna Institute of Medical Sciences, India published a paper in which they investigated factors affecting quality of life in patients with epilepsy. They found that “depression, anxiety and the use of multiple antiepileptic drugs are strong predictors of poor quality of life in epileptic patients.” For the role of age, sex, and education, scientists said that ““age, sex and education did not correlate significantly with the quality of life”. The full study could be reached here http://www.ibimapublishing.com/journals/RNIJ/2015/766328/766328.html