Caring For Loved Ones With Lennox-Gastaut Syndrome -- It Takes A Village

Eisai Recognizes Inaugural LGS Awareness Day and Epilepsy Awareness Month with Launch of New Caregiver Support Video

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Nov 08, 2012, 08:00 ET

WOODCLIFF LAKE, N.J., Nov. 8, 2012 /PRNewswire/ -- With approximately two million people in the United States living with epilepsy, including a severe and rare form called Lennox-Gastaut syndrome (LGS), many more may be struggling with the demands of caring for a loved one with this condition – a task that may require around-the-clock attention and support. In recognition of November as Epilepsy Awareness Month and the inaugural LGS Awareness Day on November 1, of which Eisai is a sponsor, Eisai announced the premiere of "Identifying Your Team of Experts," the fourth installment in their "Navigating the Storm" educational video series. The new video provides caregivers with information on how to identify a health care team, through community and online resources, to best meet their loved ones' needs.

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The "Navigating the Storm" video series can be found on LivingWithLGS.com, a website designed to help provide much needed support for parents and caregivers of loved ones with LGS. "Caring for a child with LGS is more than a full time job particularly when challenged to also try to maintain the family's quality of life," says Patricia A. Gibson, MSSW, Director of the Epilepsy Information Service at Wake Forest Baptist Medical Center in Winston-Salem, N.C. "In addition to around-the-clock care provided at home, families have the daunting task of finding a health care team who can provide the expertise and extra support they need to best care for their loved ones."

LGS is identified by three characteristics: multiple seizure types, an electroencephalogram (EEG) with a slow spike-wave pattern between seizures, and cognitive function or developmental delays. Despite therapeutic advances, LGS is challenging to control as many patients may require constant support from numerous health care professionals.

"Eisai is committed to keeping the needs of patients and their families affected by epilepsy and LGS at the forefront of all that we do as part of our corporate human health care mission," said Betsy Williams, Medical Director, Epilepsy, Eisai Inc. "We are pleased to offer the 'Navigating the Storm' series as well as a variety of other resources on LivingWithLGS.com to assist caregivers and families with the care of their loved ones who have LGS."

Lennox-Gastaut Syndrome
Lennox-Gastaut syndrome (LGS) is a rare and severe form of epilepsy that affects up to 4 percent of children with epilepsy. The age of onset is between 1 and 8 years. LGS affects an estimated 1 in 50,000 to 1 in 100,000 children.

LGS is characterized by a clinical triad of a slow spike-and-wave pattern on an EEG, impairment of cognitive function and multiple types of seizures, including tonic (muscle stiffening), atypical absence (staring) and atonic (loss of muscle tone) seizures being the most common.

Tonic and atonic seizures, also known as "drop attacks," cause the body to fall uncontrollably, and are a primary cause of facial and head injuries as well as lacerations that can leave disfiguring scars. For this reason, many children with LGS must wear helmets.

In addition to enduring multiple seizures, children and adults living with LGS may be developmentally delayed and may require help with some or all of the usual activities of daily living. The impact of seizures on children and adults with LGS requires extensive care and support from parents, caregivers and family members.

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 website connects parents and caregivers of patients with LGS to the resources they need to help 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, along with some brief information about treatment options.

Navigating the Storm
"Navigating the Storm" is a series of educational videos posted on LivingWithLGS.com that are designed to provide parents and caregivers with tools and resources to help them manage the care of their loved ones with LGS. The videos feature nationally recognized health care experts in LGS covering the following topics: overview of LGS; maintaining proper sleep habits; managing behavior challenges, and the newest video, assembling a health care team.

Eisai Inc.
Eisai Inc. was established in 1995 and began marketing its first product in the United States in 1997. Since that time, Eisai Inc. has rapidly grown to become a fully integrated pharmaceutical business. The company serves as the U.S. pharmaceutical operation of Eisai Co., Ltd., a research-based human health care (hhc) company that discovers, develops and markets products throughout the world.

Eisai has a global product creation organization that includes U.S.-based R&D facilities in Massachusetts, New Jersey, North Carolina and Pennsylvania, as well as manufacturing facilities in Maryland and North Carolina. The company's areas of R&D focus include neuroscience; oncology; vascular, inflammatory and immunological reaction; and antibody-based programs. For more information about Eisai, please visit www.eisai.com/US.