Lennox-Gastaut Syndrome: Awareness Makes a Family's Struggle More Manageable

Posted: December 07, 2016 | Word Count: 1
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This post is brought to you by Eisai Inc.

When Christina SanInocencio was just seven years old, she witnessed her three-year-old brother Michael have what would be his first of many seizures. It wasn’t until two years later that he received a diagnosis, Lennox-Gastaut Syndrome (LGS), one of the more severe forms of childhood epilepsy. Christina knows how it feels to be impacted by a family member who lives with this condition. It affects not just those who are diagnosed, but also family members, caregivers and friends. She also learned, through experience, that families often struggle to find appropriate resources to explain LGS to others.

“When we first found out Michael had LGS, we didn’t have any resources and there was no central voice for families who were dealing with this severe and very rare form of epilepsy,” said Christina. It was in 2007 that her growing frustration led to her decision to unify the community by creating the LGS Foundation, the first organization dedicated specifically to helping families and loved ones cope with LGS.

Now, as the Executive Director of the Foundation, Christina’s mission is helping LGS families gain access to resources, such as the latest educational comic book, “Medikidz Explain Lennox-Gastaut Syndrome (LGS),” endorsed by the LGS Foundation. The book is the fifth installment of the comic book series, “Medikidz Explain Epilepsy.” The series, which was developed by Medikidz and supported by Eisai Inc., delivers engaging, age-appropriate educational materials to children who are living with epilepsy so that they can better understand and explain their disease to others.

This latest comic is a story about a seven-year-old boy named Jackson who lives with LGS. The book tells Jackson’s story through the eyes of his younger sister Tenley. The Medikidz, a group of young superheroes whose mission is teaching about the body and how illness affects it, appear and explain to Tenley how LGS affects her older brother. By explaining what Jackson is going through while experiencing a seizure, the book demonstrates how to explain LGS to siblings of those living with the disease, as well as others who may not understand how LGS may impact someone’s daily life.

“This book is a great tool for patients and families, especially those who are new to LGS,” said Christina. “It helps to describe a really complicated syndrome and complex disorder in an easy to understand way. The book has a lot of benefits, not just for siblings, but for the larger community.”

To learn more about Lennox-Gastaut Syndrome and order a free copy of Medikidz, visit LivingwithLGS.com.

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