Epilepsy Awareness Month Focuses on Solving the Mystery of LGS and Other Rare Epilepsies
International LGS Awareness Day brought together thousands of people around the world to show that the challenges associated with LGS are tough, but so are those affected by this rare disease. This also kicked off Epilepsy Awareness Month – we will be raising awareness and funds for research all month long.
LGS is a severe epilepsy syndrome that starts in very early childhood and leads to abnormal brain development and intellectual disability. It is considered one of the Developmental and Epileptic Encephalopathies (DEEs). LGS frequently evolves from treatment-resistant epilepsy, a brain disorder characterized by seizures. Of LGS cases where the cause of seizures is known, half are caused by mutations in genes that can lead to early-life seizures, and the other half of cases are caused by injuries that occur around birth. In approximately 20% of cases, the cause is unknown.
To start off Epilepsy Awareness Month, LGS Foundation Executive Director, Dr. Tracy Dixon-Salazar, and her daughter Savannah, who has LGS, shared their journey on a special episode of The Balancing Act airing on Lifetime TV. Families across the globe are joining them in sharing their personal stories via social media and organizing their own LGS awareness or fundraising activities throughout the month. To learn how to support or donate to their efforts, visit the LGS Foundation website.
LGS affects approximately 50,000 in the United States and 1 million worldwide and rare epilepsies make up 10-20% of all epilepsies. Like many rare diseases, LGS can be a complete mystery when you first hear about it. LGS Awareness Day and Epilepsy Awareness Month show that those affected by epilepsy don’t have to solve the mystery alone.
“While there is no cure for LGS, there is a hopeful path forward,” said Dr. Dixon-Salazar. “The status quo is that children with LGS and other severe epilepsies are having their lives robbed from them, and adults with these syndromes are living with the burden of unrelenting seizures and side effects. The LGS Foundation is harnessing the power of the patient family community to change this and give every child and adult a chance to live their life to the fullest.”
Please help us raise awareness and funds for LGS research and epilepsy. Follow us on social media. Share our posts. Donate. We can’t do this alone. Please consider helping us solve the mystery of LGS and epilepsy.
Behind the Mystery of LGS on Lifetime TV
To learn more about the exciting work the LGS Foundation is doing to accelerate research, please visit our Finding the Cures, Together page.
Updated 08/21/24 (AM)