The Epilepsy Program of the Neurology Department of the Ruber Internacional Hospital in Madrid has published the results of a survey on the impact of Covid-19 on families with children with epilepsies of genetic origin.

The survey was carried out nationwide, with the collaboration of patient associations and other professionals.

The results of this study reveal that confinement and a health care system focused on the care of Covid-19 patients have caused 30% of these children (with epilepsies of genetic origin) to worsen their behavior and 15% have had their epileptic seizures aggravated.

The study was conducted on 277 caregivers of patients with severe epilepsies.

The epilepsies suffered by these children (genetic epilepsies and developmental encephalopathies) are a heterogeneous group of rare diseases. They suffer from epileptic seizures that are difficult to control with drugs (drug-resistant epilepsies), generally associated with other neurological disorders, such as behavioral disorders or intellectual disability, which makes them especially vulnerable to the circumstances experienced with this epidemic.

51.8% of these patients have not had access to stimulation and rehabilitation therapies.

Nine of these patients have lost previously acquired abilities related to language or the ability to walk, resulting in neurological regression.

Despite the availability of tools such as telemedicine, 62.8% of these patients have not been able to maintain contact with their neurologist.

Those patients who did not have a home with a terrace or garden suffered a greater deterioration, as evidenced by the survey.

Other relevant data:

• 9% did not have access to their usual drugs due to shortage of supplies
• 20% did not go to the emergency room due to fear
• The caregivers in charge of these patients have suffered from anxiety (68.6%) and depression (69.7).