Adnkronos (Adnkronos) – Growing up with a severe and complex form of epilepsy means facing challenges that don't end with childhood. For people with Lennox-Gastaut syndrome (LGS), a rare developmental and epileptic encephalopathy, reaching adulthood can be a particularly critical transition, where the challenges of the disease are compounded by the need to rethink care pathways, caregivers, and forms of support for the individual and their family.
A transition that, if not adequately supported, risks compromising the continuity of care and exacerbating existing fragility. It is to this challenge that UCB draws attention on the occasion of World Lennox-Gastaut Syndrome Day, celebrated tomorrow, emphasizing the importance of a care approach capable of supporting people with developmental and epileptic encephalopathies (DEE) throughout their lives, addressing the clinical, psychological, and social needs that change with age.
Lennox-Gastaut syndrome – a note informs – is one of the most severe forms of pediatric-onset epilepsy.
It is characterized by the presence of different types of epileptic seizures, often difficult to control, which may be associated with intellectual disabilities, cognitive and behavioral difficulties, sleep disturbances, and motor limitations. The complexity of the clinical picture requires multidisciplinary management, involving various specialist skills and considering not only seizure management but also the consequences of the disease on daily life.
While childhood care is generally provided by specialized pediatric teams, reaching adulthood requires a transition to services dedicated to adults. For people with LGS and, more generally, with EDD, this transition can be particularly complex, as it involves patients who often require ongoing care, multidisciplinary expertise, and support that involves the entire family unit.
Transition cannot therefore be considered a simple transfer from one specialist to another. It must be a planned and shared process, in which pediatric and adult care facilities collaborate to ensure clinical and care continuity, avoiding interruptions or fragmentation in care. Added to this is the need to address issues that become progressively more relevant as the child grows: maintaining individual skills, opportunities for autonomy, access to community services, participation in social life, and support for caregivers. For many families, their child's transition to adulthood does not coincide with a reduction in caregiving responsibilities, but with the emergence of new needs and concerns. It is therefore essential to build a network capable of integrating the hospital, community, social and health services, and associations, so that continuity of care also translates into continuity of support for the individual.
"When we talk about rare and complex epilepsies, we must remember that behind every diagnosis is a person whose life continues to evolve, along with their needs and those of their family," says Federico Chinni, CEO of UCB Italia. "The transition from pediatric to adulthood is a particularly delicate step, which should not result in a loss of references or a fragmentation of care. We believe that innovation must be accompanied by an increasingly integrated and person-centered vision of care, capable of looking beyond seizure control and also considering quality of life, autonomy, and social inclusion. For this reason, we believe it is essential to promote dialogue and collaboration between the scientific community, patient associations, institutions, and industry, so that research advances can translate into concrete and lasting benefits for individuals and their caregivers."
The need to strengthen care pathways also emerged from the recent first conference of the Lennox-Gastaut Foundation, held in Naples – the statement recalls – which placed the continuity of care between hospital and community at the center of discussions between clinicians, families, and representatives of associations. This topic highlights how the management of rare and complex epilepsies requires not only scientific advances, but also organizational models capable of connecting specialist expertise, community services, and family needs.
From this perspective, scientific research and innovation represent fundamental tools for improving understanding of the disease and developing increasingly effective responses, but they must be part of a broader vision of care. A vision in which the individual is not identified solely with their disease, and in which the quality of care is also assessed through the ability to experience each stage of life with the highest possible level of autonomy, participation, and well-being. It is within this context, the statement states, that UCB's commitment to people with rare and complex epilepsies and their caregivers fits in, promoting a person-centered approach and engaging with all stakeholders involved in the care pathways. This commitment finds, on World Lennox-Gastaut Syndrome Day, an opportunity to reiterate a fundamental principle: continuity of care should not depend on the patient's age, but should accompany them through every stage of their life.
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