Tracy Dixon-Salazar, PhD, Executive Director of the Lennox-Gastaut Syndrome (LGS) Foundation, discusses the disorder’s unique resistance to treatment.

LGS is a rare neurological condition that usually begins in childhood. It is characterized by multiple types of seizures and intellectual disability. 

According to Dr. Dixon-Salazar, the initial stage of LGS is especially frustrating. The nature of LGS means patients’ seizures get worse and more frequent over time. These seizures are also uniquely resistant to treatment which means many patients will try 10 or more drugs in their life and will not respond to any of them. With that said, there are a few FDA approved treatments for LGS (e.g., rufinamide, clobazam, cannabidiol) and even more for epilepsy; however, Dr. Dixon-Salazar points out that at least one treatment for LGS was FDA approved even though only 6% of the patient population receiving the drug were seizure-free at 2 year follow up.

Additionally, Dr. Dixon-Salazar notes that it is important to remember that even if a LGS patient does find a drug that reduces their seizures, the brain damage caused by a lifetime of daily seizures is severe and the intellectual disability that accompanies LGS creates a number of other concerns for caregivers.

To learn more about LGS and other rare neurological disorders, visit checkrare.com/diseases/neurology-nervous-system-diseases/