November 1, International Lennox-Gastaut Syndrome Awareness Day, is beig observed for the first time in Romania by the Association of Patients with Epilepsy (ASPERO), which will carry out an awareness campaign this month.

"November is globally recognised as the epilepsy awareness month, an important opportunity to share information about this common neurological condition and to support people affected by epilepsy. On this occasion, the Association of Patients with Epilepsy in Romania actively advocates for equitable access to diagnosis, treatment and quality medical care, for adequate legislation that guarantees human rights and for combatting the stigma associated with this disease, encouraging people with epilepsy to live to their full potential," ASPERO said in a press statement released on Friday.

ASPERO will host a virtual event on November 12 for people with this condition or other forms of epilepsy, for parents, and also for professionals.

The Lennox-Gastaut syndrome is a rare but severe form of childhood epilepsy characterised by seizures, developmental delay and cognitive difficulties, having a profound impact on the lives of patients and their families. About 3-4% of children with epilepsy are diagnosed with LGS, and the syndrome affects 1-2% of the entire population diagnosed with epilepsy.

The onset of the syndrome usually occurs between 2 and 7 years of age with multiple types of epileptic seizures. The causes of LGS can be genetic, structural, or the result of trauma, infection, or other conditions.

"The Lennox-Gastaut syndrome is a rare disease that sets limits in the lives of patients, both through epileptic seizures and mental retardation, and for which there is no cure yet. However, rapid diagnosis and early treatment can improve quality of life," according to ASPERO.

According to estimates, 70% - 80% of affected people experience symptomatic LGS when the disease has an identifiable cause.

Children, teens and adults with the Lennox-Gastaut syndrome have several types of seizures which include tonic seizures, atypical absences, atonic seizures, myoclonic seizures, generalised tonic-clonic seizures, infantile spasms, nonconvulsive status epilepticus (NENCS).

The Lennox-Gastaut syndrome can be caused by a variety of conditions, including brain malformations, tuberous sclerosis, perinatal hypoxic-ischemic disease, severe head trauma in early childhood, central nervous system infection, genetic or degenerative infection.

"As many as 70% of children will have cognitive delay at diagnosis and more than 50% have concomitant impairment of behaviour, with hyperactivity, rage attacks and aggression. Other common comorbidities are sleep disorders, gastrointestinal disorders, respiratory disorders, orthopaedic problems, motor impairment (cerebral palsy) and autism spectrum disorders. The mortality rate is 5% and patients with LGS may experience premature death, due to sudden unexpected death during sleep found in epilepsy, status epilepticus, trauma after atonic seizures or associated brain pathologies." AGERPRES (RO - author: Roberto Stan, editor: Claudia Stanescu; EN - author: Corneliu-Aurelian Colceriu)