For decades, stereotypes surrounding epilepsy have shaped the image of a “black disease” in Ukrainian society, forcing patients to adopt a strategy of invisibility. However, epilepsy is not a mystery but a specific physiological phenomenon. This disease was discussed in an episode of the podcast “120 Beats Per Minute” by the Humanitarian Media Hub and Nia Nickel, founder of the NGO “Epiprosvita.”
The Body’s Electricity: What Actually Happens During a Seizure
By its nature, epilepsy resembles a short circuit in the body’s complex electrical network. It is a chronic disorder of the nervous system that leads to abnormal brain activity. Nia Nickel explains this condition as simply as possible:
“To put it very simply, it’s the body’s electricity experiencing a short circuit. A person simply ‘shorts out’ at certain moments.”
The manifestations of the disease are much broader than the typical scenes from movies. It can be a ‘petit mal’ seizure, when a person freezes for a few seconds, blinks rapidly, or unconsciously fiddles with buttons. During generalized seizures, convulsions and loss of consciousness occur. The white foam, which often frightens bystanders, is caused by a laryngeal spasm that mixes saliva with air. There are also hidden symptoms: bitten cheeks or tongue after sleep, a feeling of severe exhaustion in the morning, or sudden memory problems.
Causes: Can Epilepsy Be “Contagious”?
It is important to understand that epilepsy cannot be contracted. It is not an infectious disease; it is not transmitted through contact or the air. However, there are biological factors that damage the brain and lead to the onset of the condition.
Today in Ukraine, the consequences of the war are coming to the forefront. Concussions, severe blows, and blast waves disrupt neural connections, which subsequently trigger epileptic activity. Past brain infections—such as meningitis or encephalitis—can also be a cause. Parasitic infections, such as toxoplasmosis, constitute a separate risk group. This virus is transmitted by domestic animals, particularly cats. The disease can cause fetal brain mutations if a woman becomes infected during pregnancy. Additionally, there are genetic forms where the nervous system is predisposed to “short circuits” from birth.
Read also:
How the Modern Rehabilitation System Works in Ukraine and Why You Shouldn’t Go Abroad
The Trap of Statistics: Why a Million People Remain “In the Shadows”
In Ukraine, there is a significant gap between official figures and reality. The state electronic registration system records approximately 60,000 patients. However, based on World Health Organization criteria, the number of patients in Ukraine is estimated to be as high as one million. A huge number of people fall outside the system due to several systemic barriers:
Inadequate diagnosis: The primary method is an EEG (electroencephalogram). Globally, this procedure takes several hours while the person is asleep. In Ukraine, a 15-minute examination is often conducted, which does not provide a complete picture.
In addition, there is social stigma. Men often hide their symptoms, fearing they will lose their driver’s license or reputation, as the condition is mistakenly perceived as a sign of weakness. Often, patients see no point in registering if the state does not provide them with the necessary medications for free.
“We don’t have a proper diagnostic standard. They do a 15-minute EEG just to check a box. Additionally, there’s a group of people who are aware of their condition but deliberately do nothing because any illness is seen as a vulnerability,” notes Nia Nickel.
The High Cost of a Full Life
Living with epilepsy in Ukraine is a financial challenge. For many families, it’s a path that pushes them to the brink of exhaustion. Since many modern medications aren’t registered in the country, patients are forced to turn to the black market, where prices are several times higher than in Europe.
“My husband and I work multiple jobs just to pay our child’s bills. A single bottle of necessary medication can cost 2,000 euros, and we need several per month. Plus special dietary needs, physical therapists, and making our home safe by removing thresholds,” the expert shares in the podcast.
In addition to medication, expenses include a ketogenic diet and home modifications. Installing a modern VNS stimulator, which suppresses seizures with electrical impulses, costs 20,000 euros or more.
The Digital Future and the Path to Freedom
The future of treatment is gradually shifting toward digital solutions. Already, technology allows many people to completely eliminate seizures. The VNS stimulator acts as a countermeasure against abnormal brain activity, teaching the nervous system to function properly.
The economic rationale for investing in treatment is clear: a person who receives help remains a productive member of society rather than a recipient of social benefits. Recognizing the problem and modern therapy allow people to work, play sports, and lead full lives. Only by debunking myths and providing systematic state support can we change the situation for hundreds of thousands of Ukrainians.
Read also:
“120 beats per minute.” A new podcast from HMH about Ukrainian medicine
