Epilepsy Blog Relay: Uncovering Widespread Work-Related Issues Associated With Epilepsy For Patients And Caregivers

A new, national survey of adult epilepsy patients, caregivers and healthcare professionals (HCPs) revealed a wide range of challenges in the management of epilepsy, which affects more than three million adults in the United States.1 SK Life Science, Inc. engaged Kantar Health to develop the Seize the Truth about Epilepsy Perceptions (STEP) Survey, with a goal to gain insights into the unique challenges and unmet needs within the epilepsy community.2

 

Patients and caregivers are challenged by the public’s lack of awareness of epilepsy in multiple ways. Among the life challenges reported within the survey, one area that showed to have a substantial impact – for both epilepsy patients and their caregivers – is the workplace and employment-related issues. The survey revealed key insights relating to epilepsy and the workplace including:

 

  • 36% of patients surveyed report not being able to focus at work because of their condition.
  • 33% of patients listed job discrimination as one of the negative experiences caused by epilepsy.
  • ~80% of patients and caregivers feel some form of isolation due to their epilepsy.
  • HCPs, more so than patients or caregivers, believe patients with epilepsy experience significant shame and discrimination.

 

To learn more about workplace implications, read the full fact sheet below. It’s important to spread the word so that more can be done to help the epilepsy community. To learn more about the STEP survey and gain access to helpful resources, please visit www.WebMD.com/EpilepsySurvey.

[1] Centers for Disease Control and Prevention. Epilepsy Fast Facts. https://www.cdc.gov/epilepsy/about/fast-facts.htm. Accessed September 30, 2019.

[2] SK Life Science, Inc. and Kantar Health. “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019.

Epilepsy Blog Relay: Why it’s Important to Exercise When Living With Epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Soo’s Story

My epilepsy, like so many, is not controlled. Fortunately, most of my seizures are not severe. But my quality of life is not as good as it could be. But there are some things I do that make my life better: exercise, eat well, listen to music, and play the piano.

Exercise and Epilepsy

Exercise and epilepsy–the two seem not to go together. People fear that exercising will cause seizures. In fact, regular exercise will keep you fit and improve your overall health. As long as you know your limits and take the proper precautions, such as keeping hydrated and resting as needed, you will be fine. If you are around water (e.g., swimming pool), it is always good to have a friend or family member available just in case something happens.

I’ve noticed over the last year, since I joined a circuit training class, I am feeling much better I have improved in many ways: strength, balance, and endurance. It is also a good place to share camaraderie with fellow classmates and fitness enthusiasts. Plus, the trainers make it a lot of fun.

Diet and Epilepsy

Just as important as exercise is diet. Not necessarily the ketogenic diet or Modified Atkins diet, although those are important elements in possible treatments in epilepsy. I am talking about your average, everyday healthy eating habits. Choose vegetables over chocolate chip cookies. Of course, everyone knows this. It is much harder to do because sweets are so tempting.

Find your passion

Music is another element in my life that keeps me going. I listen to different types, depending on my mood, but I mostly listen to classical music. Most people would think, That’s for the elite. It doesn’t relate to me.” You’d be surprised at how relatable it is. Classical music is often used in media very effectively. The Shawshank Redemption and The King’s Speech are great examples from the film world.

There’s another aspect to music: playing an instrument. It keeps your brain active, as well works your hand-eye coordination. I took piano lessons as a child, so I had the basics of how to play. I picked up playing the piano again just last year. I started with the beginner’s book. I surprised myself at what I could do. There’s a wonderful sense of accomplishment when you work on goals and you achieve them. I think with music, the effect is more than that, because the music itself stimulates your brain.

When you combine all these elements, I believe you will achieve some sort of happy medium. Although epilepsy is a challenge for all of us, it is good to know there is always support at Living Well With Epilepsy!


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: My sister Ellyn and her epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Laura’s Story

Growing Up with My Sister, Ellyn…and Her Epilepsy

My older sister Ellyn has epilepsy as a result of tuberous sclerosis complex (TSC). She was diagnosed at about three-months-old, so living with epilepsy was my normal. And by “living with epilepsy”, I mean watching her frequent seizures, administering a strict schedule of medications, and being hyper-attentive to her needs. It felt as if all my family’s time and energy were devoted to managing Ellyn’s seizures.

While I am proud to now be the Chief Scientific Officer for Citizens United for Research in Epilepsy (CURE), my relationship with epilepsy – and Ellyn – was a struggle. As a child, I resented epilepsy and the way it impacted my family. I resented the cancelled family events, the lack of a normal social life, and the constant demands it put on me. I resented epilepsy so much that many of my friends never knew I had a sister.

While I was never interested in studying epilepsy, I was always fascinated by the brain. My first science project in junior high was on the brain and in graduate school, I studied how hormones impact the brain. In my mid-thirties, I had a life-changing epiphany about epilepsy. At a Society of Neuroscience meeting, I saw a poster presentation featuring the first images of a mouse brain modeled as if it had TSC. I knew how the cells in a healthy brain were organized, and this brain was far from that. Looking at the chaos of this brain, it finally clicked for me – Ellyn didn’t ask for, nor deserve TSC or epilepsy. I stood there in tears because I finally understood.

This breakthrough allowed me to begin tackling my resentment toward epilepsy. It opened the doors to considering how I could support those with TSC and epilepsy. In 2012, I joined the TS Alliance Board of Directors. I had already been advocating on Capitol Hill as a part of this group alongside my mother.

In 2016, CURE approached me to become their Chief Scientific Officer. I already knew about CURE, being from Chicago, and remember my parents sharing their excitement when, years before, when they watched CURE Founder Susan Axelrod talk about epilepsy on a PBS show. I took a leap of faith, accepted the role, and am honored to help drive science toward cures for epilepsy every day.

To siblings

As a sibling to someone with epilepsy, I want other siblings to know that it’s OK if you feel angry, sad or scared, but I encourage you to share those feelings and not keep them bottled up inside as I did.

To parents

Parents, if there’s anything I hope my story can provide is the knowledge that it’s critical to create time and emotional space with your unaffected children for frank discussions. Even if you think your children without epilepsy are adjusting well growing up with a sibling with epilepsy, check in often, listen, and grow together. They may be more impacted than you realize, and it’s never too early to start addressing these feelings.

My relationship today

Today, Ellyn is doing better than ever. She still has challenges and seizures, but she is joyful and full of love, and has an amazing spirit. She tries so hard at everything she does! Ellyn never deserved the anger that I carried throughout my childhood years and I am grateful I turned that negative energy into a positive force.

I still resent epilepsy, but I love Ellyn to the ends of the earth, and I won’t stop speaking out, fighting, and focusing on the research until cures for all who are affected by epilepsy are found.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

 

Epilepsy Blog Relay: My coworkers and my epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Leila’s Story

I have exciting news: I got a new job! My previous one was rewarding but stressful and wasn’t doing anything good for my mental or physical health. Though it was bittersweet, I left to follow what I have wanted to do for years: be a school counselor.

I work at a local high school with 2,000 students. It is so busy all the time and I love it. I can already tell how positive it has been for my health and overall life. I could go on for a while about the reasons I love working in a school (and working in this school). But this piece isn’t about how much happier I am at work! It’s about what I remembered once I started working: I have epilepsy and I need to figure out how I want to deal with it in the workplace.

Epilepsy in the Workplace

It crossed my mind initially because I needed to request off time for the Epilepsy Awareness Day at Disneyland Expo in California (more to come on that in a later post). I didn’t really want to tell my boss about my epilepsy; I had avoided doing so with HR when I applied for the time off directly. He needed to also approve it, however. I told them all it was for a health conference and I was attending as one of the expo participants to help others with their health experiences and to learn more about things occurring in the field. That sounded pretty good to me! During one meeting about it though, I (without thinking about it) bluntly said it was an epilepsy conference.


Related: The Americans with Disabilities Act and Epilepsy


Telling coworkers about epilepsy

I didn’t really realize what I had done until after the conversation. I was simultaneously proud of but scared for myself. I imagined what many of us do–will I be treated any differently? What does my coworker think of me now? Do I have to work harder to earn respect? I looked back on that conversation with him and realized how he didn’t appear to treat me any differently, as some people have. Now that it’s been a while since I blurted it out to him and nothing has changed. I get treated with full respect and am given responsibilities just like my coworkers. I was nervous that the topic would get brought up in an awkward way but my brain had another idea (as usual)!

I told one other coworker directly about my diagnosis and she was surprised. She asked a couple of questions but also hasn’t treated me any differently. Since I went to EADDL and used social media to follow my days there, a few more coworkers have found out I have epilepsy. They haven’t said anything and I have decided I won’t either. It’s not something that concerns my daily work life and, to me, it doesn’t need to be given much thought in my workplace.

It is always important to make sure that you are safe in your work environment, so telling someone at work can be wise. But you don’t HAVE to do so (at least in the United States). You need to judge how comfortable you are in the situation. Don’t assume that people will treat you different or will judge you inappropriately. If you work with understanding and kind people, you should be accepted. It is a good opportunity to spread awareness and understanding about epilepsy.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

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