Epilepsy Awareness Day: New Research Supports People Living with Epilepsy
On the occasion of Epilepsy Awareness Day, TINL researchers, Prof. Dr. József Janszky and Dr. Dalma Tényi, presented the results achieved during the development of the epilepsy registry.
Strange, alarming symptoms, sudden seizures without warning. Epilepsy, the most common chronic neurological disease, is still associated with such perceptions, even though today’s therapeutic options allow most people living with the condition to lead a seizure-free and symptom-free life. Ongoing research and data collection at the University of Pécs may further improve the effectiveness of drug treatments, facilitate the prevention of seizures, and help reduce the social stigma faced by people with epilepsy.
Since the dawn of history, records have been made of epilepsy, which was long treated as a curse - or blessing - sent by the heavens in several cultures. Today, our understanding of the disease has vastly improved.
According to Prof. Dr. József Janszky, President of the Hungarian Epilepsy League and Director of the Department of Neurology at the University of Pécs Clinical Center, an epileptic seizure can be likened to an atomic explosion in the brain: a chain reaction sweeps through the neural network, causing neurons to "fire" and leading to varied and often frightening symptoms.
The mere awareness of the condition itself can be a heavy emotional burden.
"Most diseases manifest as negative symptoms, where something does not function properly in the body - take Parkinson’s disease, for example, where nerve cell loss leads to increasingly severe disorders. In epilepsy, however, the transmission of impulses between neurons is overly efficient, and it is the sudden imbalance that triggers the seizure," summarizes Dr. József Janszky, who considers the significant psychological burden of living with epilepsy to be the greatest challenge.
"A person with epilepsy never knows if they will have control over their body in the next moment. Although the seizure may last just a few seconds, the confused state of mind may persist for a long time afterward. This unpredictability represents an immense psychological burden."
Unpredictability also characterizes the causes of the disease and the manifestation of symptoms.
"About half of the cases have genetic causes. Recurrent seizures may appear at different ages, depending on the activation of specific genes: sometimes in early childhood, and the person may ‘outgrow’ the disease; other times during adolescence, and it may accompany them throughout life."
Far from being incurable
60-70% of people with epilepsy can achieve long-term seizure freedom with medication. If drugs are ineffective, surgical treatment may be considered, especially when MRI shows a developmental anomaly or other identifiable brain structural disorder forming an epileptic focus, which then triggers seizures. The necessary equipment and expertise for this are available at two locations in Hungary: the National Institute of Mental Health, Neurology and Neurosurgery in Budapest, and the Neuroscience Center on Rét Street in Pécs, as part of the cooperation between the Neurology, Neurosurgery, and Psychiatry Clinics and the closely collaborating Pécs Diagnostic Center.
Significant advances have been made in the treatment of epilepsy in recent years.
Medications with severe side effects (which used to suppress seizures by reducing neural transmission but also caused drowsiness, mental fatigue, and distraction) have been replaced by more targeted, less side-effect-prone preparations. Additionally, new diagnostic and surgical procedures are now available for drug-resistant cases. One such method is stereotactic EEG for detecting hidden foci, introduced first in Hungary at Pécs.
Real-world data, real results
Despite considerable progress, numerous questions remain unanswered regarding the efficacy and potential side effects of various drugs, as well as the triggers of seizures. Answering these questions requires vast amounts of data, as well as efficient data processing and interpretation. This goal is supported by the database established by clinicians in Pécs within the framework of the Translational Neuroscience National Laboratory (TINL).
"Currently, we can only give standard, textbook answers to questions like how many people live with epilepsy in Hungary. We know that approximately one percent of the population is affected, and based on that, we estimate a number. However, we do not know the current, real number, nor do we know what type and severity of epilepsy the patients have," emphasizes Dr. Dalma Tényi, a physician at the Neurology Clinic of the University of Pécs, who is working on the development of the epilepsy registry.
Although a huge amount of data is generated in healthcare, a significant part of it is unstructured, making it unsuitable for modern data analysis methods. As a result, it cannot be utilized in research, even though real-world data holds immense value.
"It is much easier to identify the side effects of specific drugs using data generated during patient care compared to clinical trials with a limited number of participants," says József Janszky. The data collection system developed over several years contains an enormous number of parameters, and identifying correlations between different data points could help establish the most effective therapies.
Identifying seizure triggers
Another crucial goal is the comprehensive identification of so-called triggers that provoke epileptic seizures. "We know about many triggers from the literature, but identifying the actual causes of seizures reliably requires the analysis of large amounts of real-world data. This has significant implications for patients’ lives, as understanding the triggers can lead to effective seizure prevention strategies, thereby reducing the psychological burden caused by the unpredictability of epilepsy," says Dalma Tényi.
The database also contains data related to depression and anxiety, which often coexist with epilepsy. This is important because epilepsy significantly increases the risk of suicide.
The next phase of the data collection, which has been ongoing for a year, will begin in April with data processing. The aim is to bring significant improvements to the care of people living with epilepsy across the country.
"Our goal is to ensure that the knowledge acquired here can also be utilized elsewhere. While high-level expertise, equipment, and staff are available at the Budapest and Pécs centers, care for people with epilepsy in other parts of the country remains inconsistent, and these results may help improve the situation," says József Janszky. As part of this effort, there are plans to expand the currently regional epilepsy registry, which primarily includes data from patients in Transdanubia, to cover the entire country.
There is still much to be done at the societal level as well.
Comprehensive knowledge is essential not only for the treatment of epilepsy but also for improving the social perception of people living with the disease, as ancient prejudices persist to this day.
"During a seizure, witnesses are confronted with the unsettling sight of a person who, just moments earlier, appeared entirely normal, suddenly behaving in strange and disturbing ways—convulsing, undressing, or making loud chewing noises. It’s hard to prepare people for this," explains József Janszky.
Understandably, many people choose to hide their condition due to social stigma, which makes it more difficult for patient advocacy organizations to do their work. To address this, an epilepsy information day is planned for May 31, where doctors and patients can openly discuss the disease and living with it. The event will definitely take place in Budapest and Pécs, and preparations are underway for organizing it in other cities as well.
Improving the situation of people living with epilepsy requires not only medical advances but also social change. It is worth remembering this on Valentine’s Day, as Saint Valentine is not only the patron saint of lovers but also of those living with epilepsy.