Eisai Inc. introduced a new educational program today to help parents and caregivers of patients with Lennox-Gastaut syndrome (LGS), a rare form of epilepsy in which patients have frequent seizures of multiple types. The program is centered on the new Web resource, www.LivingWithLGS.com, offering updated information and an educational video series called "Navigating the Storm."
A recent survey released by the Epilepsy Foundation highlighted the need for improved resources and assistance for the caregivers of these patients. According to the results, only 14 percent of caregivers who were surveyed strongly agreed that they knew where to look for information about LGS. The survey also concluded that the information and resources of greatest interest to parents will be those that help them cope with the family's day-to-day challenges in living with LGS.
"The new program, 'Navigating the Storm,' provides parents and caregivers of LGS patients with practical advice from physicians to help them provide optimal care for their child while maintaining the family's quality of life," said Cynthia Schwalm, president, Eisai Inc. "Eisai is committed to addressing the unmet needs of these families through our hhc (human health care) mission and we are pleased to launch the program during Epilepsy Awareness Month."
LGS is one of the most severe forms of childhood epilepsy and is characterized by multiple and frequent seizures. In the United States, 2.1 million patients are diagnosed with epilepsy and treated each year. LGS accounts for 1 to 4 percent of all childhood epilepsy cases. Children usually experience the onset of LGS between the ages of 3 and 5 years old.
"As a healthcare provider for children with devastating epilepsies over the past 20 years, it is clear that helping the child is only one part of the solution," says Tracy Glauser, M.D., Director of the Comprehensive Epilepsy Center, Cincinnati Children's Hospital Medical Center. "It's always important for parents to take care of themselves. They are the first line of help for their child, and if they are not functioning at 100 percent, they need to get help. It is critical for parents to know that it is not a sign of weakness to get help."
LivingWithLGS.com
LivingWithLGS.com was created to provide support and resources for parents and caregivers of children with LGS. LGS can impact daily life in a number of ways, including family relationships, school and home life. The Web site connects parents and caregivers of children with LGS to the resources they need to help them manage their child's condition while maintaining their family's quality of life. Caregivers can also learn more about the syndrome overall, including multiple seizure types and behavioral issues associated with LGS. A range of treatment options are also covered including seizure medications, diet therapy and surgery.
Navigating the Storm
At the cornerstone of the program is a video series, "Navigating the Storm." The three-part series was produced for the parents or caregivers of a child who has recently been diagnosed with LGS. The videos provide advice to help caregivers seek appropriate care and learn to cope with LGS.
The first video of the series, featuring Dr. Tracy Glauser, includes general information about LGS, questions for caregivers to ask their healthcare provider, and practical lifestyle tips for families dealing with LGS. The video is approximately three minutes long by design, in light of the already time-pressed LGS caregiver who needs to receive information as quickly and efficiently as possible. In addition to LivingWithLGS.com, the videos will be available in the online domains, on sites such as YouTube.com, allowing caregivers to access the content through their own Web searches. The second and third videos in the series, which will cover topics such as sleep hygiene and stress reduction techniques, will be available in early 2010.
"Parents want information about LGS and options for treatment, and are eager for help in addressing behavioral issues, as we learned through our survey," said Eric Hargis, president and CEO of the Epilepsy Foundation. "LivingWithLGS.com is a great new online resource for these busy parents."
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