SITUATION WITH EPILEPSY IN UKRAINE
It is known that 5% of the population in their lifetime tends to have at least one seizure such as epilepsy, but only 1% do consider themselves epileptics in the event of recurrence of seizures. The first seizures usually occur in childhood, but they can appear later, in the elderly after 65 years. Usually the onset of the disease is influenced by factors such as genetics, vascular problems, injuries or tumors.
There are few or no statistics on epilepsy in Ukraine. This is due to the fact that for many in Ukraine epilepsy is still a mental illness, despite the fact that this disease occurs due to "electrical" brain dysfunction. Probably, there are about 300-500 thousand patients with epilepsy in the country.
The origin of this disease, the problems faced by Ukrainians in the treatment of epilepsy:
Pregnancy and childbirth:
There is often a lack of information on the actual course of pregnancy, childbirth and the first days of children's lives in Ukraine. In fact, a few moments of oxygen deficiency (poor oxygenation) are enough to create damage to the brain, which can then become a focus of epileptic seizures, or worse, lead to limited psychomotor capabilities. Epilepsy can also be affected by: infection before or after birth (encephalitis, meningitis, rubella, toxoplasmosis, herpes…), stroke, sinus thrombosis, fetal brain abnormality, imbalance of certain indications in the blood due to the use of maternal and toxic substances or honey etc.
With our experience in Ukraine, only 5% of parents who faced problems during pregnancy and childbirth had true and detailed information. Then, like others, did not conduct special observation by specialists during his childhood.
In cases of epilepsy, seizures that occur in childhood are not always the biggest problem with a child's health. Each case is individual and the diagnosis in each of these cases must be made correctly. And in Ukraine there are only about 30 competent neurologists in this field,
Not all types of epilepsy necessarily need treatment, but special and constant medical supervision is essential. In Ukraine, therapists are not trained in such observation of their patients
- Epilepsy that goes unnoticed:
Tremors, uncontrolled muscle cramps, absences (short-term loss of consciousness), vision problems, hallucinations, ... can be signs of brain dysfunction, and in some cases predictors of epilepsy. Therapists often do not associate such symptoms with possible epilepsy, despite the fact that there are simple methods for diagnosing the disease.
- Highly poorly controlled fever in childhood, with seizures can also be a signal and a harbinger of epilepsy. But parents, relatives or the patient himself doubt and do not talk about it,
- Unlike in France, there is no real Diagnostic Center for Epilepsy in Ukraine, which could identify the disease and identify the causes of epilepsy in each case. In fact, there are about a dozen such centers in Europe, where in one institution you can access the necessary components of quality diagnostics, namely:
- EEG electroencephalography, the examination will last several hours or, if necessary, several days,
- Video EEG monitoring, which allows you to record the attack, while recording the activity of the brain and video of the patient,
- Various MRI (Magnetic Resonance Imaging) of excellent quality with the ability to visualize in 3D,
- MRI angiography for vascular problems,
- Functional MRI examinations, which allow to isolate as much as possible the area responsible for the attacks, as well as to determine the adjacent areas,
- PET SCAN, which reveals the nature of the probable lesion and vascular problems,
- SCANNER to look for tumors or vascular problems,
- SEEG / SEEG (stereotactic deep electroencephalography), a high-precision stereotactic method with implantation of intracerebral electrodes allows you to register the functioning of the brain for several days and more accurately locate epileptic foci,
- The laboratory of biological researches allows to define the maintenance of separate specific elements at various epilepsies, and also evaluates efficiency of treatment,
- Laboratory of genetic research to determine hereditary causes,
- Neuropsychologists who identify psychological and motor problems associated with the disease, its origin, its consequences, as well as determine the effectiveness or ineffectiveness of treatment,
- And very importantly, a full team of epilepsy specialists who work to solve each patient's problem.
- In Ukraine, due attention is usually not paid to the testing of some blood parameters, although they are of particular importance (metabolic disorders, glycemia and hypoxia). This also applies to vitamin D, as it can affect the provocation and duration of various epileptic seizures, especially in patients who are already receiving medication.
- The origin of some epilepsies is still unknown. But it should be noted that in European countries, personalized treatment of epilepsy can improve the quality of life in 90% of patients. In Ukraine, this figure is much lower and is only about 20-30%.
- In Ukraine, specialized doctors work individually, because the decision to prescribe treatment and even more so surgery must be collegial. It should be taken in conjunction with a neurologist, family doctor, plus, if necessary, a surgeon, neuropsychologist and radiologist. But such a connection is absent in Ukraine, despite the presence of some good professionals who have mostly studied abroad.
- Many anti-epileptic drugs, which are commonly used in Europe and the United States, are not available in Ukraine. In addition, it is estimated that approximately 7/8 of 10 patients do not actually receive individually tailored treatment. The non-transparent organization related to the registration of medicines in Ukraine prevents many very effective drugs from becoming available to patients.
- In addition, the available drugs are dosed for adults, so parents of children with epilepsy are forced to turn into "pharmacists" to grind several times a day and bring to the desired dose of a drug.
- Due to the lack or lack of trust in local doctors, parents and patients change the dosage themselves, which can lead to the risk of toxic poisoning.
- It should also be noted that treatment for epilepsy is not necessarily expensive, except in the case of new drugs, which are produced in limited quantities. And this opinion is often among doctors and, accordingly, among patients.
- Copies or generics of anti-epileptic drugs (very common in Ukraine) must comply with European standards, otherwise there is a risk of overdose or serious side effects.
- The sale of drugs not available in Ukraine via the Internet or local intermediaries has recently appeared. First, the price of such drugs is 3-4 times higher than the initial one, and secondly, they can be ineffective copies or even dangerous drugs.
- Treatment for epilepsy can vary, doses increase, decrease, stop for a while or forever. Therefore, constant monitoring of the patient by the same neurologist or team of specialists is essential for many years. For example, there are drugs that must be discontinued some time before pregnancy and during pregnancy. Also, several new, more effective drugs appear each year that can replace existing molecules. Many anti-epileptic drugs are taken with progressively increasing dosage, reduction or complete cessation of such drugs is also gradual. Patients do not regularly receive the necessary information or reminders from their doctors for two reasons: a general lack of specialists and, in most cases, a poor command of English among doctors.
- Many epilepsies are a side effect of more serious pathology, but seizures are aimed at improving the patient's quality of life. In these cases, the use of treatment based on cortisone or ketogenic diet gives results, but in Ukraine this area is still very underdeveloped and remains unknown.
- Many adults, and many more than we think, have complications with epilepsy that have been or have not been treated in childhood. Your spouse, friend, acquaintance or colleague may have side effects of such epilepsy: absences, hallucinations, involuntary twitching, missing eyes, various tics. Such signs indicate that the disease may still be present, and that at any time it may worsen and become more serious. For example, childbirth can trigger epileptic seizures in the mother that have never been seen before. In this case, you should consult a neurologist, who will be able to determine whether it is really epilepsy or not, and what treatment should be considered.
- Usually, people suffering from epilepsy in Ukraine are ashamed of their situation and do not dare to talk about it, even to their loved ones. This is most likely due to the mental legacy of the Soviet era, when epileptics were sent, sometimes against their will, to specialized centers or they became unfit for any activity in society.
- In many cases, parents feel guilty about their child's epilepsy, while often there is no good reason for it. This guilt often escalates into anger towards doctors, who have little or no effect on reducing seizures or determining the origin of the disease in the child. But here, unfortunately, there is no support from psychologists and virtually no activity of parent associations and groups.
- Sometimes there are hereditary causes, but they are very rare (less than 10%), and in Ukraine such cases are impossible to diagnose.
- Making a profit using hopelessness: Parents and patients very often despair when they cannot find a solution to epilepsy in Ukraine. Some scammers try to take advantage of this situation and profit from it. Epilepsy is not treated with herbs, exotic foods, conspiracies or prayers. But sometimes there is a direct link between food and seizures, in Ukraine there is no nutritionist who could talk about this topic.
- Be careful with "miracle works", there are several such machines in Ukraine, and treatment with their help costs a lot of money. The ability to destroy or bombard a tumor without surgery exists, but it must occur in very serious and professional conditions, and affects brain tumors less than 30 mm.
- more information: http://www.medinfrance.org/novosti/5/