(BPT) - Kairo was a baby when his seizures began. Hospital stays, tests and medications followed, and eventually his family had a name for what he was facing: Lennox-Gastaut Syndrome (LGS).
For families like Kairo's, epilepsy is only part of the story.
LGS is a rare, severe form of epilepsy that develops in young children and can lead to lifelong disability. The condition affects about 50,000 in the United States and 1 million worldwide.
While seizures are a defining feature of LGS, their impact can extend much further. People with LGS typically experience more than one type of seizure, sometimes several in a single day, and most continue to have seizures despite trying multiple medications. LGS can also affect development, communication and behavior, creating complex and evolving needs for individuals and the families who care for them.
Behind every diagnosis is a family
The journey with LGS can involve uncertainty, medical appointments, treatment decisions and the ongoing demands of care. No two experiences are exactly alike.
Kairo's family says their early concerns were brushed off, and that some of the hardest moments have come from fighting for access to care and essential equipment, not only from the seizures themselves. What has helped most is doctors who listen and families who understand. As his mom puts it, "Families like ours should not have to fight this hard to keep our children safe."
Stories like Kairo's are a reminder that behind every diagnosis is a person, and that LGS affects the entire family.
Awareness can open doors
Every year on Nov. 1, the LGS community comes together for International LGS Awareness Day™. This day brings families, advocates, healthcare professionals, researchers and supporters together to increase understanding of the condition, advocate for change and help accelerate research.
This awareness is important all year long as it helps families find something deeply important: connection.
The LGS Foundation provides opportunities for families to connect through online communities, patient navigators, family ambassadors, private support networks and other resources developed for people affected by LGS.
Families can also help shape the future of LGS research
There is currently no cure for LGS, and more than 85% of children with the condition will continue to experience seizures into adulthood despite available treatments.
Better understanding LGS requires learning directly from the people who live with it. Through the LGS-CORE Study, individuals and families with LGS can contribute information about their experiences, symptoms, treatments, milestones and quality of life. That information can help researchers identify patterns, understand unmet needs and explore new directions for research and care.
The study reflects a larger principle behind the LGS Foundation's research efforts: Families help shape the questions researchers seek to answer. Its multi-year Powering Breakthroughs research plan puts families at the center and focuses research on improving outcomes that matter to people living with LGS.
Learn, connect and take action
The LGS Foundation is a nonprofit organization dedicated to improving the lives of people affected by LGS by supporting families, increasing awareness and advancing research.
Take a moment to learn more about LGS, share reliable information with someone who may benefit, or connect with the community to help make a rare condition more visible and better understood.
Visit the International LGS Awareness Day™ website to learn more and find ways to get involved.
This article was developed by SK Life Science, Inc., a proud supporter of the LGS Foundation.
