Lennox-Gastaut syndrome (LGS) is a rare and severe form of childhood epilepsy. The seizures associated with LGS are difficult to treat, with patients often taking multiple antiepileptic drugs in attempts to control the seizures. Since the multiple types and frequency of seizures can lead to developmental delays, as well as behavioral disorders, LGS is a disease that is devastating to the lives of patients and caregivers.
Shortly after the FDA approved BANZEL for the adjunctive treatment of seizures associated with in the U.S., Sylvia Brown, our Product Director of the drug, met several families with beautiful children and adults living with LGS. She learned that they all had trouble finding a physician with the expertise to treat and ultimately diagnose LGS and felt alone in their journey to find answers, not knowing what to expect or what the future holds for their children.
Given the limited information on the syndrome and few health care professionals focused on treating LGS, she realized that there was an opportunity to raise general awareness of LGS by allowing parents to share their journey for the benefit of others.
Since then, Sylvia Brown and her colleagues spent a great deal of time so as to foster a close relationship with LGS patients and their families. In addition to launching a website BANZEL.com to provide information regarding the syndrome and our new treatment option for seizures associated with LGS, the team developed a film entitled Minute by Minute: a Documentary about Living with LGS, that focused on a range of topics involved with caring for someone diagnosed with Lennox-Gastaut syndrome.
The highlight of this documentary is sharing journeys from two children with LGS and their families. Both parents recounted the early symptoms, the first seizure observed, their search for answers and eventually a diagnosis. They both had experiences visiting several physicians – pediatricians, neurologists and epileptologists – before finding one they trusted to provide care and meet the needs of their children. Ultimately, they found a team of health care professionals and educational programs for special needs children to develop life skills and engage in daily activities. These efforts ensure their children have the best quality of life as possible. In the film, these parents show that you eventually find a way to live with LGS and treasure moments in light of seizures.
Going forward, Eisai will continue to utilize this documentary film to educate healthcare professionals and the families and caregivers of LGS patients. We also plan to create materials that will cover an even wider range of needs of these patients.