Paving a better future for people living with Lennox-Gastaut syndrome

For over 30 years, we have provided solutions that have helped improve the lives of millions of people living with epilepsy. Through both our initiatives and collaborations with partners, we are always striving to use our expertise to make a difference in the lives of people living with epilepsy.

A priority focus area for UCB is Lennox-Gastaut syndrome (LGS), a rare severe form of epilepsy with a significant burden for patients and families and high unmet medical need.

What is LGS?

LGS affects an estimated one million people worldwide; it is a severe childhood-onset developmental and epileptic encephalopathy (DEE), a group of epilepsies associated with developmental impairment, and characterized by several different seizure types.

People living with LGS often experience drug-resistant seizures, meaning that multiple treatment attempts have failed to help them to minimize seizure burden, which makes the condition extremely difficult to treat. Overall mortality and Sudden Unexpected Death in Epilepsy (SUDEP) are also major concerns for people living with LGS and their loved ones.

The impact of LGS goes beyond seizures and includes cognitive impairment, communication difficulties, psychiatric symptoms, sleep and behavioral challenges, and mobility problems. All of these issues significantly impact both patients’ and caregivers’ quality of life.

Why is there a significant unmet need in LGS?

A UCB-supported study presented at the 15th European Epilepsy Congress 2024 highlighted the significant burden for people living with LGS in Europe, featuring data from 454 people living with LGS.

The main findings from the study included:

• People living with LGS experience both seizure and non-seizure impairments, that become increasingly significant with age
• Despite people with LGS on average receiving more than three antiseizure medications each day, only 13% report good or very good quality of life
• 19% of people with LGS report severe or very severe physical impairment, while 28% report severe or very severe mental impairment

The study authors suggest that these findings point to an unmet need for therapies which can target both drug-resistant seizures and the non-seizure impact of LGS, to improve care for people living with the condition.

The study also found that the mean age of LGS diagnosis (five years old) was roughly a year later than the most common age of seizure onset (four years old). It’s vital that the time to diagnosis is reduced and that we build awareness of LGS to enable earlier intervention to improve outcomes for people living with the condition. 

Our commitment to the LGS community

LGS is difficult to diagnose because of the lack of specific biological markers of the condition, multiple possible causes, and varied presentation of symptoms.vi At the European Epilepsy Congress (EEC), UCB presented details of a new LGS electronic decision-assisting tool based on the International League Against Epilepsy (ILAE) diagnostic criteria. Developed by a group of ten epilepsy experts1, the tool is designed to help physicians evaluate the likelihood that their patient has LGS.

It is hoped the online tool will drive disease awareness and encourage HCPs to consider LGS as a potential cause of the challenges that the patient is facing, potentially accelerating diagnosis and helping families living with LGS to receive the support they need sooner.

The importance of collaboration  

Both in LGS and across the epilepsies more broadly, we are reminded of the importance of collaboration and knowledge sharing to build a better future for people living with epileptic conditions.

At UCB, we are driven to keep pushing forward with scientific innovation to better understand these life-changing conditions, the challenges being faced by the community, and how we can offer improved care to patients, their caregivers, and families. We stand with the epilepsy community and are committed to making a real difference to their lives.