Sarah Carlson is a former Madison news anchor, mom and epilepsy advocate. Upon learning of her epilepsy diagnosis and having a seizure on-air during a live news broadcast, Carlson “wanted people to know about epilepsy, and I wanted people to see the stigma that comes with it.” Today, she is a business development manager for an architecture firm in the Madison area and serves on the Epilepsy Foundation Board in Wisconsin. Learn about Sarah Carlson…
Hometown and current residence: I was born and raised in Oak Park, IL, and now live in Verona, WI.
First job: Waitress – and one of my favorites. I think everyone should have to work in hospitality in some form.
Favorite ways to spend your free time in WI: Running, a relaxing weekend day with my fiancé John and the kids when the kids are home (teenagers), walking our dog, and spending time with my parents and best friends.
Your biggest accomplishment and why: Running the 2019 Chicago Marathon with a guide – and qualifying for the Boston Marathon. I raise funds for the Epilepsy Foundation by running marathons, and I run with a guide in case of emergencies through a program, Athletes with Disabilities. I have run this marathon seven times, and I try to think of someone, or something, related to epilepsy during every mile to motivate me.
The biggest obstacle you overcame throughout your epilepsy journey: There were a few challenging obstacles that I overcame in my epilepsy journey. After I stepped away from my career as a broadcaster to focus on managing my epilepsy diagnosis, I started searching for work, willing to take just about anything involving communications. After a year of searching, I couldn’t even get an interview. No one said they didn’t want to hire me due to the seizures (not to mention it would be illegal and immoral), but I knew this was the reason.
I had a contact in the Chicago area, where I grew up, who was willing to hire me to run a startup PR business. After living in Chicago for five years, my seizures worsened, making it more challenging to work. I lost my driver’s license, I had countless stressful jobs with unaccommodating employers, but luckily had family there to support me and my children. Soon after, I went on disability, as recommended by my neurologist, to focus on living longer and finding seizure freedom.
The most challenging was when my parenting ability was questioned due to my epilepsy diagnosis. After having been a single mom for 10 years, my kids were required by court to move back to Wisconsin – which required me, a disabled woman with no driver’s license, to visit her kids in another state. The pain from being apart made me want to give up. Until I met my doctor, Dr. Smith, and his approach kept me going when I was introduced to XCOPRI (cenobamate). One month after beginning XCOPRI, my seizures stopped. (You can learn more about this treatment option at XCOPRI.com or from your healthcare provider.)
Someone who inspires you and why: My fiancé John is the one who inspires me the most. I have never known a person who works so hard and is so loyal and loving. During some of my most challenging times during my epilepsy journey – when I wasn’t working, when my kids were living in Madison, while I was in Chicago, and when I was trying new medications – John supported me and took care of me. I wouldn’t be here today if I hadn’t met him.
Advice to someone managing an epilepsy diagnosis or to someone going through a major health life change: No matter what, do not give up on where you are in your treatment journey. As my doctor always says, it’s seizure freedom that we want and deserve but this may look different for everyone. Be sure to search for someone – a doctor – who can help you work to get there and always advocate for yourself and your goals.
Favorite quote: “It is during our darkest moments that we must focus to see the light.” -Aristotle Onassis
Something someone would be surprised to learn about you: I was dancer growing up and still love to dance. I took ballet in college as electives to help with my GPA and if I could take a hip hop class every day, I would.
What makes someone fabulous: Someone who is not afraid to be themselves and who is kind.
I’ve known that beautiful young woman since she was born. She has always exhibited musical skills, courage and determination. Her courage in the face of contracting epilepsy has been an inspiration to us all. She is and will always be “fabulous” in spite of the obstacles that were placed in her path. I always knew she would overcome and she has.