International LGS Awareness Day
Throughout my career working with the epilepsy community, I have witnessed firsthand the strength and resilience of individuals and families living with epilepsy.
We can never stop learning and broadening our understanding, and that is why today - International LGS Awareness Day - UCB is helping raise awareness of the rare epilepsy Lennox-Gastaut Syndrome (LGS) and elevating stories from those directly affected.
For those who are not aware, LGS is a severe, rare epilepsy syndrome that can develop over time, typically starting with seizures around preschool age. People living with LGS experience multiple types of seizures, which are almost always very difficult to treat.
LGS has far-reaching effects beyond seizures, including issues with communication, psychiatric symptoms, sleep, behavioral challenges, and mobility. Nearly everyone with LGS will have developmental delay within five years of diagnosis, and LGS often results in lifelong disability.
We are often told that life with LGS is ‘consistently inconsistent’, and that having a child with LGS can be emotionally isolating, therefore a strong community of support is important - as LGS affects each person and their family differently.
Today, we’re proud to be able to share a glimpse of one family’s daily life.
Please do watch this short video to hear from Lori, a mother of a son living with LGS on her family’s experience, to learn more.
We will be sharing the stories of families impacted by this rare disease today and throughout the year.
Join in this International LGS Awareness Day by helping raise awareness and advocating for those in need, connecting people to the great resources and organizations out there who can help.