Epilepsy
For almost three decades, UCB has made major contributions to improving epilepsy care. We continue to work to address key unmet needs in epilepsy, notably drug-resistant epilepsy and people living with severe or rare forms of epilepsy, where few options exist.
Epilepsy is a condition that affects the brain and causes seizures.1 An epileptic seizure happens when there is a sudden burst of electrical activity in the brain that temporarily affects how it works.2
There are two main types of seizure, focal and tonic-clonic.2 In focal seizures, what happens and what symptoms occur depend on which area of the brain is affected, and whether the seizure spreads to affect other areas of the brain.3 Tonic-clonic seizures can have a generalised onset, which affects both sides of the brain from the start, or start in one side of the brain and then spread to affect both.4
Around 600,000, or one in every 100 people, in the UK have epilepsy, with 87 people being diagnosed every day. It is estimated that with the right treatment 60% of people with the condition could be seizure free.5 The aim of treatment is to enable patients to lead a life as normal as possible, free from seizures and with minimal or no side effects.5,6
The profound physical, psychological, and social consequences of epilepsy, and its impact on a person’s quality of life, can be significant. Seizures can be unpredictable and there is significant stigma associated with the condition.
UCB supports the Young Epilepsy’s Young Reps programme, to understand the impacts of epilepsy on patients’ lives, the insights of which are key to informing our solutions. In Ireland, we have facilitated the establishment of an Epilepsy Patient Registry in Ireland, in partnership with FutureNeuro and Royal College of Surgeons in Ireland (RCSI).
To learn more about epilepsy, head to Epilepsy Action and Young Epilepsy.
Dravet Syndrome
Dravet syndrome is a rare and life-long form of epilepsy that begins in infancy and is marked by frequent seizures that are resistant to treatment.7,8 People with Dravet syndrome experience significant developmental and motor impairments that persist into adulthood and have an increased risk of sudden death known as Sudden Unexpected Death (SUDEP).9,10
The disease affects approximately one in every 15,000 babies born in the UK11 and severely impacts the quality of life for patients, their families, and caregivers due to its high physical, emotional, and financial burden.12 Approximately 66% of caregivers experience depression due to the devastating nature of Dravet syndrome.13
We at UCB have witnessed first-hand the remarkable work being done by caregivers, nurses, doctors, therapists, and researchers to make every day a little better for Dravet patients and their families. We are acutely aware of the urgent unmet medical need that remains for people living with Dravet syndrome for effective and tolerable treatments, seeing as even with multiple conventional anti-epileptic drugs, seizures remain poorly controlled, and quality of life is not majorly improved.14
As a leader in neurology, we are committed to the development of new solutions for rare forms of epilepsy that will help transform the lives of people living with severe neurological diseases such as Dravet syndrome. We believe that collaborative working projects will deliver real results for the NHS and patients, which is why we have partnered with the NHS to support diagnosis and management of Dravet syndrome.
To learn more about Dravet syndrome, visit Dravet Syndrome UK.
To learn more about how we are collaboratively working with the NHS on projects to deliver real results for Dravet patients, head to our Partnerships page.
Lennox-Gastaut Syndrome (LGS)
LGS is a rare, severe form of epilepsy, characterised by the presence of multiple different types of seizures,15 such as atonic, tonic and atypical absence seizures.16 It usually starts during childhood and persists into adulthood.17 LGS affects approximately one or two in every 100 children previously diagnosed with epilepsy. 18
LGS impacts a person’s cognition, which can often impact language and communication. It is associated with severe personality and behavioural disorders such as hyperactivity, aggression, and autistic tendencies, and there is also a tendency for psychosis to develop over time.19
Causes of LGS can include:18
- genetic conditions
- structural or developmental abnormalities in the brain
- complications during childbirth, such as oxygen deprivation
- infections in infancy, such as meningitis
- a severe head injury resulting in brain damage, and metabolic disorders
However, in up to a third of people diagnosed with LGS, no cause can be found for the onset of symptoms.20
LGS not only impacts the patient, but can also affect their entire family ‒ parents, caregivers and siblings ‒ in multiple ways. They often experience physical exhaustion, disrupted sleep and feelings of isolation, which can lead to depression and social and private life problems.21 Besides the physical and psychological impact, caring for a person diagnosed with LGS can also be associated with financial concerns.22
To learn more about Lennox-Gastaut Syndrome, head to Epilepsy Action and Young Epilepsy.
For healthcare professionals:
If you’re a healthcare professional specialising in neurology and want to learn more about our work, head to UCBCares (UCB in epilepsy), or UCBCares for Neurology (UCB in neurology).
References
1 Epilepsy Action. What is epilepsy? Available at: https://www.epilepsy.org.uk/info/what-is-epilepsy. Last accessed: December 2024.
2 NHS. Epilepsy Symptoms. Available at: https://www.nhs.uk/conditions/epilepsy/symptoms/. Last accessed: December 2024.
3 Focal Seizures. Epilepsy action. https://www.epilepsy.org.uk/info/seizures/focal-seizures. Last accessed: December 2024.
4 Tonic Clonic seizures. Epilepsy Action. https://www.epilepsy.org.uk/info/seizures/tonic-clonic. Last accessed: December 2024.
5 Epilepsy Action. Epilepsy facts, figures and terminology. https://www.epilepsy.org.uk/press/facts. Last accessed: December 2024.
6 Souza JL, et al., The Perceived Social Stigma of People with Epilepsy with regard to the Question of Employability. Neurology Research International 13;2018:4140508.
7 Dravet C. The core Dravet syndrome phenotype. Epilepsia 2011;52 (Suppl 2):3-9. doi: 10.1111/j.1528-1167.2011.02994.x. PMID: 21463272.
8 Epilepsy Action. Dravet Syndrome. Available at: https://www.epilepsy.org.uk/info/syndromes/dravet-syndrome. Last Accessed: December 2024
9 Lagae L, et al. Quality of Life and Comorbidities Associated with Dravet Syndrome Severity: a Multinational Cohort Survey. Dev Med Child Neurol 2018;60(1):63-72.
10 Anwar A et al. Dravet Syndrome: An Overview. 2019 Cureus 11(6):e5006. DOI 10.7759/cureus.5006.
11 Dravet Syndrome UK. About Dravet Syndrome. Available at: https://www.dravet.org.uk/information-support/about-dravet-syndrome/ Last Accessed: December 2024.
12 Gil-Nagel A, et al. Patient profile, management, and quality of life associated with Dravet syndrome: a cross-sectional, multicentre study of 80 patients in Spain. Sci Rep 2023; 13: 3355. https://doi.org/10.1038/s41598-023-30273-z.
13 Villas N, Meskis MA, Goodliffe S. Dravet Syndrome: Characteristics, Comorbidities, and Caregiver Concerns. Epilepsy and Behavior. 2017 Sept 1; Volume 74, P81-86.
14 Adam Strzelczyk & Susanne Schubert-Bast (2020) Therapeutic advances in Dravet syndrome: a targeted literature review, Expert Review of Neurotherapeutics, 20:10, 1065-1079, DOI: 10.1080/14737175.2020.1801423.
15 Amrutkar CV, Riel-Romero RM. Lennox Gastaut Syndrome. [Updated 2023 Jul 31]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK532965/
16 National Organization for Rare Diseases (NORD). LGS. Available at: https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome. Last accessed: December 2024.
17 Epilepsy Ireland. Lennox-Gastaut Syndrome. Available at: https://www.epilepsy.ie/content/lennox-gastaut-syndrome. Last accessed: December 2024.
18 Epilepsy Action. Lennox Gastaut syndrome. Available at: https://www.epilepsy.org.uk/info/syndromes/lennox-gastaut-syndrome. Last Accessed: December 2024.
19 Patient Info. Lennox-Gastaut syndrome. Available at: https://patient.info/doctor/lennox-gastaut-syndrome. Last accessed: December 2024.
20 Young Epilespy. Lennox Gastaut Syndrome. Available at: https://www.youngepilepsy.org.uk/sites/default/files/dmdocuments/Lennox-Gastaut.pdf. Last accessed: December 2024.
21 Cross JH, et al. Expert Opinion on the Management of Lennox-Gastaut Syndrome: Treatment Algorithms and Practical Considerations. Front Neurol. 2017;8:505. Published 2017 Sep 29.
22 Gibson PA. Lennox-Gastaut syndrome: impact on the caregivers and families of patients. J Multidiscip Healthc. 2014 Oct 4;7:441-8. doi: 10.2147/JMDH.S69300.
IE-DA-2400180 | December 2024