- 09:30
Engaged for more than ten years in the fight against medical exclusion, Professor Karine Abou Khaled chairs the Epsilon association. On the eve of the tenth Scientific Day, organized this Friday at USJ, This Is Beirut revisits the realities of epilepsy in Lebanon, the daily challenges faced by patients in a country in crisis and the crucial role played by Epsilon on the ground.
There is epilepsy, its seizures, its fears, its stigmas. And then there is Lebanon, its shortages, its hospitals on their knees, its families wandering in pharmaceutical disarray. This Friday, May 23, on the campus of the Faculty of Medicine of USJ, the Epsilon association will hold its tenth Scientific Day, with one motto: “Improve the quality of life and the social integration of people affected by epilepsy in Lebanon.”
Beyond Seizures: A Fight for Dignity
Since 2014, the Epsilon association has set itself the mission of bringing epileptic patients out of the shadows. Founded – with other doctors – and chaired by Professor Karine Abou Khaled, a passionate neurologist and tireless activist, the organization has established itself as a bulwark against medical and social exclusion. It supports people with epilepsy on all fronts: neurological care, psychological support, legal assistance, school mediation and political advocacy.
An emergency that Abou Khaled hammers home with lucidity and emotion.
“One in 26 people may be affected by epilepsy,” she reminds This is Beirut. “No school classroom, no shop, no building in Lebanon is spared.”
This chilling statistic, though little known, reflects the extent of an often invisible but omnipresent affliction.
What Epilepsy Is… and What It Is Not
“An epileptic seizure results from abnormal and sudden electrical activity in the brain,” Abou Khaled explains. It can occur at any age, without warning, and instantly disrupt an individual’s daily life. There are many forms: generalized seizures, which affect both cerebral hemispheres, can cause loss of consciousness, cyanosis and violent convulsions; absence seizures, sometimes more discreet, cause short lapses in contact that can repeat more than a hundred times a day. And then there are focal seizures, which affect only one area of the brain but generate disturbing symptoms: phantom smells, sudden feelings of anxiety, uncontrolled movements.
“Imagine the impact of such seizures on daily life: work, school, social relationships...” says the neurologist. In a country like Lebanon, where access to care has become uncertain, this diagnosis often becomes a silent sentence.
Professor Sami Richa, psychiatrist and speaker at the Scientific Day, wants to clear up another point of confusion, stating, “For me, epilepsy is not a mental illness. Far from it, there is nothing to suggest it meets the criteria of mental illness. However, since the substrate of mental illnesses and epilepsy is the same – that is, the brain – inevitably, when one has a brain issue, one may consequently develop mental disorders.”
This link, he adds, often manifests through severe depressive episodes in patients, worsened by stigma, isolation and the constraints of treatment.
He explains how “suicidality can be much higher than in the general population. And this is where we need to intervene, to prevent depression from further worsening the prognosis of epilepsy.”
Epsilon: A Decade of Silent Struggle
Created in 2014, the Epsilon association set out to break the isolation of patients and their families.
“Epilepsy is not just a neurological condition. It’s also a social, economic, educational and human issue,” emphasizes Abou Khaled.
Year after year, Epsilon has woven a network of medical and psychological solidarity: free specialized consultations, support groups, multidisciplinary follow-ups, educational workshops, financial aid, medication donation drives, sometimes even personal imports via the Lebanese diaspora.
The association has stayed its course, even in the most troubled waters: the economic crisis, currency collapse, mass departure of doctors, Beirut port explosion and the COVID-19 pandemic.
“In 2019, well before everything exploded, we had already seen warning signs. We canceled a social event and used the funds to buy medicines that we later distributed during the critical months of the pandemic,” states the Espilon founder.
The Scandal of Abandonment
Since 2019, it’s been a series of shipwrecks. The shortage of antiepileptic drugs has become chronic. Some products have disappeared from the shelves. Others, imported at exorbitant prices, are no longer within patients’ reach.
“I’ve seen families alternate doses every other day or cut pills in half to make them last. And of course, that increases the risk of seizures, falls and head trauma,” explains the professor.
A study conducted by Abou Khaled herself revealed an alarming impact of the crisis on patients’ quality of life.
“This is not a treatment like any other. Forgetting a pill can lead to hospitalization or death. The danger is very real,” she emphasizes.
In her eyes, Lebanon is going through a period without equivalent in the world. “No doctor has practiced under such conditions.”
System, Solidarity and Dignity
In this chaos, the “friends of Epsilon,” in Lebanon and abroad, have often played the role of a survival network.
“Relatives, volunteers and tourists discreetly brought back a few boxes of medicine in their suitcases. We sorted then redistributed them according to the patients’ specific needs,” Abou Khaled reveals.
This solidarity network compensates for a dramatic absence of the state.
“It’s thanks to the citizens that we held on. This isn’t even resilience anymore. It’s greatness,” she adds.
Abou Khaled also pays tribute to the Lebanese Army, the only structure that has managed, despite everything, to maintain access to certain vital treatments for its soldiers.
Inclusion, A Societal Challenge
On May 23, Rita Moukarzel, the head of social responsibility strategy at Epsilon, will carry high the values of inclusion and destigmatization. She will detail the levers for lasting change: adapting educational institutions, training teachers, raising employer awareness, informing the general public, mobilizing families and relying on social media and art.
Because art therapy here makes perfect sense. According to Moukarzel, “It allows patients to express themselves differently, to reclaim their bodies, their story. It restores self-esteem, promotes resilience and weaves connections.”
A committed lawyer for patients with neurological disorders, Me Nay al-Hachem emphasizes the importance of a legal framework that guarantees equality, stating, “It is crucial to recognize that people with epilepsy should not be defined solely by their medical condition, but by their abilities, aspirations and rights. Discrimination is an obstacle to education, employment and full citizenship. Yet the right to education, vocational training and a decent and adapted job are not privileges: they are fundamental rights. There must be a clear commitment from both public and private actors to ensure true equality of opportunity.”
School: A Field of Struggle and Hope
At Abou Khaled’s initiative, training workshops were organized – before the crisis – with school counselors and public sector teachers. The objective was to detect, support and integrate.
“We saw a clear evolution in attitudes. We demystified seizures. We armed adults for emergencies,” Epsilon’s founder proudly says.
In a society where the gaze of others can hurt more than an illness, this approach is fundamental.
“The first reflex of some parents is still sometimes to hide their child’s illness. That has to change,” she adds.
Surgery: Last Resort, Rare Miracle
When medication fails – which happens in 30% of cases – a thorough evaluation is necessary. Brain imaging, prolonged EEG, analysis by a multidisciplinary team: every detail matters to identify the epileptogenic zone. If conditions are met, a resective surgery may be considered. But the obstacles are numerous: equipment cost, unavailability, the cancellation of “non-urgent” operations during COVID...
Professor Ronald Moussa, neurosurgeon and speaker at the tenth Scientific Day, emphasizes these challenges: “Surgical treatment is expensive and often inaccessible without support. It requires coordinated care, specialized equipment and post-operative support. We need real backing from the Ministry of Health and NGOs.”
“We continued to operate as much as possible, but at a slower pace and with limited resources,” he explains.
Neurosurgery, the last hope, often remains out of reach without external support.
A Call to Action
As Lebanon tries to keep its head above water, Epsilon calls for a governmental surge.
“We need support from the Ministry of Health, Social Affairs, the entire state. Epilepsy can no longer remain a matter of volunteers and suitcase donations,” shares Abou Khaled.
The public is invited to listen, understand and interact. Perhaps also to commit.
“Epilepsy is not a fatality. But indifference is,” she concludes.
On Friday, May 23, patients will speak, and families will testify.
And maybe this day will finally bring about...
Comments