Sylvia Nelson was diagnosed with idiopathic epilepsy 55 years ago. Although she experienced a few sporadic seizures over the years, she’s been fortunate to control her epilepsy with medication. That changed in 2007 when she experienced a “storm of seizures” and had six during an eight-day period. Thankfully the seizures stopped when she started a new medication program, however, this experience prompted Sylvia to begin opening up about her epilepsy.
After some encouragement, Sylvia attended her first EFMN Day at the Capitol. Along with dozens of other individuals impacted by epilepsy, she met with her legislators to educate them about what it means to live with epilepsy. She can still remember just how nervous she was about sharing her story and tells others, “It’s ok to be scared doing something for the first time.”
It turns out her first Day at the Capitol was such an energizing experience that afterwards Sylvia looked for other ways to connect with her legislators. She began attending town halls and other group meetings in her area and quickly realized these meetings were another way for her to show her face and build a relationship with her legislators.
“Also, I am able to show them what it is like to know a person with epilepsy,” says Sylvia, who leverages those personal connections to make a difference.
These connections allow her to talk about advances in research and medications with her legislators, as well as ask questions about laws and get thoughtful responses in return. When Sylvia moved to a different city, she saw it as an opportunity to continue spreading her message.
“I was pleased to know that I had a new representative and senator who could listen to my story.”
Sylvia shares her story with others in a variety of ways, such as thoughtful Facebook posts, writing for the Creative Arts Epilogues program, and talking with those around her. She’s found a calling in spreading epilepsy awareness, though she recognizes not everyone is as comfortable as she is.
“When I moved into my 55+ senior living community, I met three other people who have epilepsy. I think I’m probably the one who is most outspoken, but I also realize how important it is to respect their privacy.”
It’s Sylvia’s belief that anyone can become an advocate, but they first need to find what they’re passionate about. For Sylvia, it’s music, her faith, and epilepsy. For you, it could be anything.