2024-08-01 21:00:39
The disease is still avoided
“When a person hears the diagnosis of epilepsy, he is usually afraid, unsure, and has many questions. And it should not be surprising that it is difficult to find information, because residents suffering from this disease usually do not talk about their condition”, D. Balčikonienė begins the conversation.
According to the interlocutor, one finds oneself in a vicious circle: one does not talk about the disease, because the diagnosis is hidden due to the prevailing attitude of the society. When hidden, myths don’t get debunked and change doesn’t happen.
“People are afraid to talk about the disease in public, they are ashamed to announce the diagnosis to their relatives, what to talk about the general public. Even the new members of our union hide their identity at the meetings, and at the meetings they communicate remotely without turning on the cameras”, the head of the Lithuanian Epilepsy Union (EPILĖ) shares her experience.
“It’s sad, but we still receive information that a child with epilepsy does not want to be admitted to any educational institution because of the disease. The situation is also bad for adults – not a single employer refuses to employ a person with epilepsy, even if the work is not something that the person cannot do due to their condition. Therefore, the question arises for many working people, whether to tell about the disease or not, and if to tell, how to do it”, says D. Balčikonienė and claims that the sick still feel a lot of discrimination.
Manifests not only in convulsions
People usually think that epilepsy manifests itself in one and only way – the patient loses consciousness, falls to the ground, and has a seizure. However, according to D. Balčikonienė, there are many forms of the disease – well over a hundred.
“A person may not even realize that a friend, colleague or even relative has had an epileptic seizure, because from the outside they may simply appear confused, thoughtful, silent or slurring words. Arm, leg or neck muscle tension, rhythmic jerks, etc. are also characteristic. Therefore, I am sure, there is at least one person with epilepsy in our environment, who is just hiding it,” the interlocutor is convinced.
D. Balčikonienė does not hide that she has been suffering from epilepsy for 26 years. The disease struck the woman in her teens. “I remember when I was 14, I woke up one morning in the hospital. It turned out that I passed out during the night and my parents called an ambulance. I was then discharged home, but the fainting episodes recurred every few months. Finally, epilepsy was diagnosed and treatment was prescribed,” the woman shares her memories.
The head of the Lithuanian Epilepsy Union says that, in order to overcome the disease, drug combinations are repeatedly changed. Unfortunately, the desired results were not achieved. “Previously, the attacks started to get worse, longer and more frequent. Research results have deteriorated. So doctors decided to implant a vagus nerve stimulator. I can be happy that the situation was managed – it is not getting worse”, reveals D. Balčikonienė.
Stimulator – help in the most difficult cases
About 70 percent people with epilepsy can control the disease with drugs prescribed by an epileptologist-neurologist. If medication fails to control seizures, some undergo surgery to implant a device called a vagus nerve stimulator to help control the disease.
For the seventh year now, the State Sickness Fund under the Ministry of Health (VLK) has been centrally purchasing vagus nerve stimulators, which are implanted in people with a persistent and treatment-resistant form of epilepsy. The implanted device sends impulses through the vagus nerve to the brain, thereby blocking epileptic seizures.
This operation is performed in the Kaunas Clinics of the Lithuanian University of Health Sciences Hospital and in the Santaras Clinics of the Vilnius University Hospital.
According to VLK, vagus nerve stimulators with a value of 20 thousand are purchased with the funds of the Compulsory Health Insurance Fund (PSDF). euros, at least 20 patients are implanted every year.
What else is compensated?
Data from the Institute of Hygiene show that in Lithuania approximately 25 thousand people, including about 3 thousand children with epilepsy. Currently, Lithuanian residents suffering from epilepsy are reimbursed by PSDF funds for necessary medicines and medical aids, expensive tests, treatment costs for very rare conditions, and other personal health care services. PSDF budget funds intended to compensate the costs of treatment of patients with epilepsy amounted to 8.4 million last year. euros.
Although epilepsy is a clinical diagnosis, that is, it is determined based on the clinical expression of seizures, after the examination, a specialist doctor can prescribe the necessary tests to clarify the diagnosis.
Many patients undergo an electroencephalographic examination, magnetic resonance imaging, computed tomography or radioisotopic tests. Last year, almost 231 thousand was paid from the PSDF for expensive tests for epilepsy patients. euros.
At the moment, sickness funds reimburse 96 names of 16 different active substances for the treatment of epilepsy with PSDF funds.
According to VLK, last year in Lithuania almost 20 thousand patients with epilepsy used compensatory drugs. Over 3.3 million was needed to pay their expenses. EUR from PSDF and 290 thousand. euros from the state budget to cover patient premiums. Another 242.5 thousand EUR PSDF funds were allocated to the treatment of 30 patients diagnosed with very rare epileptic conditions.
For people with epilepsy, a doctor of physical medicine and rehabilitation, after assessing the state of health, can prescribe initial, outpatient, and for children, inpatient rehabilitation services paid for by the PSDF.
For adults, rehabilitation services are given after taking into account the health problems caused by epilepsy, and for children – when the seizures are controlled by regular use of anti-epileptic drugs or after epilepsy surgery.
2024-08-01 21:00:39