The section chief of pediatric neurology at Nationwide Children’s Hospital provided his thoughts on raising awareness for Lennox-Gastaut syndrome on International LGS Day.
"I think it’s a really important opportunity to raise awareness around LGS. Largely because a diagnosis of LGS does connect a family to great resources and organizations.”
Today, November 1, 2020, the world will come together and raise awareness for Lennox-Gastaut syndrome, a rare epileptic disorder that affects nearly 48,000 children and adults in the United States, and over 1 million worldwide. LGS constitutes between 3% and 4% of all children with epilepsy and 1% to 2% of all people with epilepsy.
Anup Patel, MD, section chief of pediatric neurology, Nationwide Children’s Hospital, is too familiar with the struggles that patients with LGS and those within the community face. There is currently no cure for LGS and there are even fewer treatments options available than for other rare epilepsies such as Dravet syndrome. Furthermore, between 30% and 50% of children with infantile spasms will develop LGS, and almost 80% to 90% of children will continue to have seizures into adulthood. Along with a mortality rate of 5%, those with LGS are 24 times more likely to die prematurely.
Patel, who also serves as the associate professor of clinical pediatrics at Ohio State University, has been well connected with the LGS community for years now. He sat down with NeurologyLive to provide prospective on what the day fully entails, and why continuous awareness can only bring about more benefit.