The stigmatization of people with epilepsy is still not a thing of the past. In Austria there are 80,000 people living with and affected by this disease. Freedom from seizures is the major goal in order to be able to live everyday life – both privately and professionally – without obstacles. But only 60 to 70 percent of the time the way there is crowned with success. All other affected people are considered therapy-resistant and continue to suffer from seizures of varying degrees on a regular basis, despite medication or other possible treatment methods. With a new substance, 20 percent of them could now open the door to the therapy goal, epileptologists emphasized during a press conference on Wednesday.
Statistically, ten percent of the population will experience an epileptic seizure once in their lifetime. An electrical discharge in the brain leads to a dysfunction that can range from short absences to longer-lasting seizures. For outsiders, epilepsy is not always recognizable as such. It is also called the disease with a thousand faces.
Some people suffer brief lapses that are not even noticed by the outside world. In others, the disease is evident. This ranges from cognitive absence to minute-long convulsions that end in unconsciousness. Due to the diversity of this disease alone, it often takes a long time before a diagnosis can be made and treatment can be started.
Symptoms often not clear
It is also almost impossible for outsiders to recognize seizures that are not accompanied by the known symptoms and then to be able to provide appropriate help to those affected. Even epilepsy patients find it difficult to classify other forms of the disease.
There are many possible triggers that can affect nerve cells in the cerebral cortex – from genetic defects and developmental disorders to metabolic factors or lesions in the brain, such as scars, tumors or strokes. Compared to the general population, there is a two to three times higher mortality in people with epilepsy – if freedom from seizures can not be achieved – emphasized the neurologist Tim von Oertzen from the Kepler University Hospital in Linz. In addition, the disease can be associated with “high stress” for those affected. These range from physical, psychological and social problems to reduced quality of life.
Although the range of anticonvulsants is wide, life has hardly improved for 30 to 40 percent of patients. That could change. The data on the active ingredient cenobamate are “particularly promising,” explained Eugen Trinka from the University Clinic for Neurology.
Long-term data of more than eight years are already available. Since March 2021, the drug has been approved in the EU for adjunctive therapy in certain types of seizures that are not adequately controlled despite previous therapy with at least two antiepileptic drugs. It can currently be administered from the age of 18, explained the epileptologist Gerhard Luef from the Medical University of Innsbruck. Approval for children is also being sought. Corresponding studies are already underway. For 20 percent of therapy-resistant patients, this could lead to seizure freedom. “This reduces mortality and enables a normal life,” stressed Trinka.
Live a normal life
A normal life, as everyone affected wishes. For people with epilepsy, life is often associated with great stress. “In addition to the disease burden per se, they often have to contend with prejudice, lack of information, stigmatization and exclusion from the general population,” emphasizes Valérie Thiele, affected mother and representative of the Epilepsy Umbrella Association of Austria (EDÖ). “Epilepsy research has only been developing for 200 years, the condemnation of epileptics has existed for 40,000 years,” she lamented. The FDÖ is making a major contribution to getting the disease out of its shadow and making the population understandable, according to EDÖ President Michael Alexa. An effort to end stigma. In any case, a new gateway to possible seizure freedom has now been opened.