There are an estimated 750,000 people with epilepsy in France, 150,000 of whom are resistant to drug treatments. This is the case of Lilian, who has just spent three days in this service, of which he has become a regular for two years.
The young man, now 18 years old, was diagnosed with epilepsy as a baby, at the age of 18 months, after a series of episodes of convulsions. It turns out he suffers from a rare, dangerous, drug-resistant epilepsy, but it is inoperable. Transcranial stimulation called tDCS (transcranial Direct Current Stimulation) has become his only therapeutic option to space out the crises that punctuate his daily life. Luckily, Lilian turned out to be a “super responder”, which means that this process worked well in her case, and allowed her to reduce the frequency of epileptic episodes by half.
“ABefore, I had two seizures per weekend, now I haven’t had one since this summer. says Lilian, who sees her life as an epileptic as “normal, with a small disadvantage in everyday life. A BTS student in Aix-en-Provence, he wants to organize himself so that “studies and illness are one” and follows his classes via video, electrode cap on his head, during neurostimulation sessions.
“He’s doing better since he went down to three seizures per month thanks to tDCS“, confirms his mother, Béatrice, who never leaves his side. She, who stopped working to watch over him, describes him as “a good-natured little guy always in a good mood“, but she assures that her son’s dazzling smile says nothing about “the suffering behind the crises, the falls, the pain and the risk… he has already spent three stays in intensive care.” Béatrice explains that Lilian’s seizures have the particularity of not stopping when they start and “require an injection in hospital, because they can endamage the brain.“
When your child has three or four seizures a week, it’s impossible to leave him alone, you live every moment with a sword of Damocles hanging over your head.
Béatrice, mother of LilianFrance 3 Provence-Alpes
The effects of this cranial stimulation therapy on her boy are beyond doubt. Béatrice naturally comes from Antibes to spend three days at the Timone hospital with Lilian, every two months, because “the game is worth it” she assures.
Professor BartolomeÏ, main instigator of the European Galvani project on epilepsy started in 2019, explains with ease: “classic tDCS is very simple, you pass a current between an anode and a cathode, to excite certain areas of the brain and inhibit others. The new experiment which is beginning, called GS3, will have a double challenge, he explains, both “therapeutic, to demonstrate that the tDCS that we developed with Galvani is effective, but also technological.”
The digital twin is a modeled brain that reproduces the birth of seizures and their propagation, enabling virtual interventions to alleviate seizures.
Professor Fabrice Bartolomeï, head of the epileptology department at La TimoneFrance 3 Provence-Alpes
In this program, the stimulation will be optimized by virtual modeling, with the creation of digital brain twins. “We model the patient’s crises”, explains Fabrice Bartolomeï, “which makes it possible to simulate the most effective stimulation“. Ce “protocol quite complex in its methodology and ambition” will therefore be a world first, carried out with teams from INSERM, the University of Rennes and the company Neurolectrics which creates the devices and contributes to research.
“The virtual brain”, used until now exclusively in surgery for brain operations, “is a virtual object that will allow you to test several stimulation combinations”. This therapeutic trial, which is in its infancy, will include 60 patients spread across seven centers in France, including Marseille, Rennes, Bordeaux, Paris and Lille.
The objective of this GS3 study will therefore be to scientifically prove the effectiveness of neurostimulation, practiced for 18 years in this Marseille laboratory, with a view to obtaining its recognition by the European Medicines Agency, which will, finally, allow its reimbursement on a European scale within five years.
Lilian is not part of this experiment, because he now experiences fewer than three epileptic seizures per month and is not part of the selection criteria for test patients. Béatrice nevertheless rejoices “to see neurostimulation recognized and extended to other patients“because this technology promises patients”an easier life“and give loved ones a little respite.”With an epileptic child you never fully sleep, monitoring epilepsy is a full-time job.”