Stepping Out of Our Lennox-Gastaut Syndrome (LGS) Bubble

"By letting [others] know about LGS, it empowered me and it made me not feel scared to get out in the community with my daughter."

– Kelly, mother of young daughter Isabela

Enjoying Time With Family and Friends

LGS families often express how difficult it was for them in the early part of their LGS journey to step out of their home—their comfort zone—and go to public places. Caregivers have described how they worried about their child having seizures in public and how others would react. With the daily demands of caring for a loved one with LGS, it’s often easy to feel like you’re “living in a bubble.” While it takes time and effort to keep relationships strong, it’s well worth the investment.

Having a strong support system can help you handle the ups and downs of LGS. And while LGS can be confusing for others to understand, educating them by sharing your experiences can help them better connect with you and your loved one. LGS caregivers have shared these thoughts as they think about their bonds with family and friends. 

Reconnect

“Friends and I, we’ll go to the movies, and we’ll sit and chat afterward and have a little visit.”

– Jennifer, mother of teenage son Theo

“When you get the diagnosis of Lennox-Gastaut syndrome, it’s a diagnosis, it’s not a name for your child. Your child hasn’t changed, they’re still your little boy or girl. Grab on to people whom you can make part of your team. That will lift you up.”

– Karen, mother of adult son Dan

Reassure

“It’s a constant process working with our family and friends in helping them understand the best way to interact with our daughter.”

– Elizabeth, mother of young daughter Spencer

Recharge

“To keep sane, I like to go out with my girlfriends. I like to go grab a cup of coffee or maybe go out to dinner with them, or even go for a walk. You need that time to regroup.”

– Kelly, mother of young daughter Isabela

LGS Together

Join the online LGS Together Facebook community to make new friends who understand what your life with LGS is like. 

Rate this article