About epilepsy and not only

About Epilepsy and Other Things

(The article was started on September 4, 2006 and finished on October 10, 2013)

Everyone in this life goes through a pain. There’s no man who would at all times have everything going all right. Thisespeciallyconcernshealth. We come into the world and die suffering from pain; however, we all want to live a happy life between these two events.

Unfortunately, quite a lot of families come up against a situation where one has to suffer from pain and cry bitterly almost every day.

Among an enormous list of diseases causing grief in a family there are some worth being paid special attention to. Oneofthemisepilepsy.

Nobody will deny that merely a name of this pathology strikes terror into people.

According to hard statistic figures, 70% of people suffering from epilepsy are children. And, therefore, it is such children’s parents who most frequently found themselves in a terror-stricken state.

What do mother or father feel when their child’s illness was diagnosed as epilepsy?

First of all, it is fear, and then — protest. A protest against everything: the world, doctors, other healthy children. And most importantly – against the diagnosis!

Anderrorsbegin immediately.

The first and the most common mistake is an attempt to find a doctor, but a doctor who will not try to cure of the disease but who will deny the diagnosis.

The second no less common error but more serious and resulting in worse consequences is an attempt to correct treatment on one’s own.

And the third mistake is constant changes of doctors!

Of course, there’s a whole list of incorrect steps that we will try to analyse below. But let us start with a question of what is the cause of these errors?

In our opinion, it is lack of professional, structured and reliable information available for everyone. And the main thing – available for those who has encountered this disease for the first time!

Nowadays people trust mass media and articles like this very little. And this is understandable: at the end of practically each of such articles what is offered is either a biologically active additive, or a ‘reliable method’ to get rid of an illness, or an attempt to swindle out of money for those who are in need. Besides, many authors are not aware of what they highlight, or have a very superficial idea of it.

What gives me the right to reason exactly so? First of all, the fact that I am a doctor! Secondly, I am a father who has gone through sufferings of own children, through own emotional stress, sleepless nights, despair, fear and desire not to awake in the morning! And also through feeling happy because of child’s recovery, his laughter, study at school and aikido training!

When my child fell ill, and for the first time I realized the whole terror of infantile cerebral paralysis and West syndrome, I started to tear around. I tried to get involved the best doctors – my teachers. My brain refused to work of a wild state of cold vacuum.

I bow my thanks to my mentor, a man of vast soul — Nikolai Alexeyevich Dyachenko, a deputy chief doctor of Children’s City Clinical Hospital No.1 in Almaty.

In utter despair I came to him… He didn’t calm me down but asked severely: «Are you gonna throw away your child in the garbage?». I replied ‘No’.

«Then, he said, dry your tears and go and work! Learnthispathology! No one but you can describe correctly its symptoms and manifestations to the doctors who will treat your child. Stop running from one doctor to another! Hundreds can consult the child, but one should take a decision! Not a single fool will do such harm as a few smart professors but having different opinions. A car that a few, even first-class, drivers try to drive will inevitably break down!».

The other side of this trouble has always become more complicated by family members’ attitude toward it. I do understand grandpas, grandmas, mothers and fathers, all other relatives who would like to see a healthy child with no problems.

And when they were told that he is seriously ill and it’s necessary to treat with lots of medicine and injections for 3 to 5 years, their mind refused to believe it. Each of them tried to find a ‘good doctor’ who would tell them that there’s no pathology. And the most terrible thing is that they did find such doctors!

Under the influence of such ‘apologies for a doctor’ I was accused that I am tormenting and killing my kid. They stopped curing, and even when deterioration started, they closed eyes to it and hoped that it will stop itself. Because that good doctor said “will outgrow”, it means “will outgrow”.

Every doctor, including myself, certainly, can make a mistake.

But when a neurologist gives an injection with a soporific or antispasmatic drug, and after that takes electroencephalography and, of course, not having found anything on a shot, tells parents that treatment may be cancelled – such ‘successful’ treatment should be equaled to a crime.

As soon as you escape from such ‘doctors’, a new problem comes – complete disunity of experts in this area and often their negative attitude toward each other.

Even if a previous doctor administered medicine correctly, every new doctor for some reason feels it his duty to critically assess its predecessor first, then all others, and then to change the treatment fundamentally. Andnotalwaysforthebetter!

Andit’snotonlyourdomesticdoctors. The same situation is in Moscow, in Israel and in many other clinics.

Separation of opinions and overcoming of ambitions have not allowed for a long time finding an optimal solution. And what does time mean in this disease? It’s a future of the child! The longer attacks do not respond to a treatment, the more serious are irreversible changes occurring in brain.

The next thing that shocked me was to find out that in Kazakhstan there’s even no such profession – epileptologist! Andthisdiseaseistreatedby… neurologists. Undoubtedly, the level of such doctors as M.M. Lepesova, R.K. Aldungarova (by the way, she is a president of the Kazakhstan Epilepsy Control League), R.A. Yerenchin, doctors of my little son – R.B. Karimova, S.Kh. Prokhorova and many others allows approaching this disease correctly. But in most cases neurologists have a vague idea of the depth of the problem.

This is why patients with absence epilepsy are administered carbamazepine. Children who have suffered from convulsions with fainting 3-4 times a day for seven and more years continue to be diagnosed such illnesses as affective respiratory syndrome, or convulsive disorder. Therefore, antiepileptics are administered in courses like vitamins, or when attacks stop, antiepileptic drugs are cancelled in a month or half a year.

Not every neurologist can read an encephalogram, and after neurologists see a conclusion of a neurophysiologist saying that there are no pathological changes for 10 minutes on a record made during an attack-free interval, they decide that a patient has no epilepsy.

Of course, this can happen. According to statistics, specific changes are found only in 30% of epileptics in an attack-free period. Therefore, there exist special examination methods in the form of a long-term video EEG monitoring, EEG Holter monitoring, stress EEG and other.

Sometimes it’s impossible to find changes even by means of these modern devices, especially against the background of taking medication.

My deep gratitude to my teachers and doctors of my son whom I mentioned above. They shared their knowledge with me, they were seeking for new methodologies in treatment and examination. It is only thanks to their committed work and high sense of responsibility that we were able to get a positive result. If it were not for them, then meeting low-experienced doctors, I could have made a lot of mistakes and done harm.

At first, I felt furious with my colleagues because of their lack of knowledge, ambitiousness and militant amateurism. But little by little, going into the problem, I understood that they have nothing to blame for!

Is it possible to blame a man for his not understanding the taste of banana, if he even does not know of its existence?

Then I started to glean data about new methodologies, contraindications and indications of various medicines, side effects of each drug taken separately and combined with one another, I started to systemize the materials about what is allowed to be done and what is forbidden for those suffering from this disease.

When we have problems, we often find the state to be guilty. And how much surprised I was when I learnt how much is being done in Kazakhstan in order to solve this problem! But something interferes with maximum using preferences and achieving a maximum effect from all of its efforts.

The deeper I realized this area of medicine, the more and more I understood that it’s impossible to do well alone.

Luckily, there were friends around me who during this hard time helped not to let my spirits sink and rendered financial and moral assistance.

I can’t help bowing my thanks to Arkhimed Mynbayevich Iskakov, the Gorbatovskiye family, the Subkhanberdins, the Gukasovs, the Abishevs and many others.

I was surrounded with my colleagues who have big and generous hearts. And my parents and family members were beside me. It is exactly the fact that in our family we have a few generations of doctors that allowed achieving a success.

In 1990, in a year after I graduated from the institute, with the help of my father V.M. Savinov and mother G.V. Savinova I specialized in alternative medicine, therapeutic massage, acupuncture, children’s surgery, manual therapy, children’s orthopaedics and neuroorthopaedics.

Afterwards I also specialized in neurology, pediatrics and some more applied areas. While continuing to study, we opened a private rehabilitation center for treatment of children with birth injury consequences, the second center of such kind in our country.

While gaining experience, we understood the necessity of family medicine, and since 1994 we had been busy with supporting families under the principle of a ‘zemsky doctor’.

Unfortunately, many of those who we started to work with at that time have left Kazakhstan. But those who remained beside were associates in medicine indeed. Their courage and self-sacrifice were the basis for implementation of the project of the Laboratory for study of sleep problems, a headache, epilepsy and SVS convulsive states, as well as for opening of Public Association SVS Nevro.

Together with colleagues we were dealing with analyzing Kazakhstan’s and international resources available in Kazakhstan with regard to treatment-and-diagnostic equipment, personnel, treatment and rehabilitation methods. Over a hundred of doctors and professors were questioned to study the big picture.

As a result, we have reached the following conclusions:

  • Epilepsy does not respond to treatment in 20% of cases only.

  • A whole spectrum of necessary medication is available in Kazakhstan for its successful treatment.

  • In fact, the problem is of enormous social significance because there are more than 180,000 patients only in Kazakhstan.

  • More than half of all patients are children.

  • In Kazakhstan a percentage of recovery is almost twice less than according to the worldwide data.

  • More than half of parents who have a child suffering from epilepsy in the family do not work.

  • As a result of ineffective treatment, up to 18% of patients become mentally impaired and about 40% of patients become physically disabled.

  • On the average, annually up to 80,000 tenge is spent per patient for treatment and compensation. Considering the above mentioned figures, one can estimate damage caused to the state and people in case of incorrect treatment.

  • There was no expert-class equipment in Kazakhstan: video EEG monitoring, EEG Holter monitoring, equipment to determine a drug concentration in blood, stress monitoring to identify load tolerance (resistance).

  • No surgical centers for epilepsy operative therapy.

  • There is no a register of patient treatment outcomes, negative results and drugs side effects.

  • No record of drugs used in an ordinary treatment practice but contraindicated in epilepsy and convulsive syndromes.

  • No dedicated Internet site.

  • There was not a single specialized preschool and school institutions.

  • No structure that would provide legal support of patients.

  • Lack of a single information space and link between health professionals, pharmaceutical companies and patients.

  • An absolutely wrong idea of this disease has existed in the society.

Based on the aforesaid data, we developed and started gradually to implement a project that would allow helping patients and doctors in epilepsy and convulsive syndromes control.

To begin with, it was necessary to create a medical institution equipped with facilities for long-term EEG (electroencephalography) monitoring.

Such equipment is manufactured by several firms but only one of them had first-class parameters. Whatdoes ‘firstclass’ imply? It is very important to record electroencephalography correctly but even of greater importance is to decode it, to separate artifacts of motion, muscle tension and merely cellular interferences from a genuine cerebral rhythm.

If pathological changes are severe and if it’s an adult patient who can sit quietly and follow orders, then it can be somehow understood what’s going on. And what if it’s a child, or a patient in an attack-free interval?

In this case almost nothing can be done using outdated eight-channel one-mounting devices. ‘Readable” information can be obtained only by means of digital devices that can record simultaneously both electroencephalography (including the one lasting from one hour to 2, 3 days) and a video image.

But the main thing is that video files do not ‘lag behind’ EEG. And recording should be performed in a digital format, making it possible subsequently to interpret the data obtained, transmitting from one regime to another. No less important is that equipment is ‘unattached’ and mobile.

I was constantly tormented with the question: what’s going on in patients and in my son’s head at the moment when they are watching TV; whether it’s harmful for them to go by car, maybe it’s harmful to be in a back seat and it’s acceptable to be in a front seat. May they go in for sports or not? How does a computer or cinema affect EEG? And these are not just idle questions, this is life itself.

Therefore, no doubt, an indispensable thing was a portable Holter device for mobile situational EEG monitoring. Furthermore, according to international standards, all medical institutions involved in epilepsy and convulsion treatment should be equipped with similar devices.

Epileptic changes are characteristic of 18% of patients with sleep disturbances (somnambulism, somniloquence), psychomotor retardation, ICP and aphasia. In examination of such patient contingent no pathologies are identified on practically all routine (ordinary) EEG records. That’s why it is necessary to make a record during a natural physiological sleep, in the conditions of specialized in-patient clinics and laboratories, using video EEG, EEG Holter monitoring with sleep deprivation.

Patients suffering from convulsive attacks, epilepsy, depressive syndromes have for many years to be taking drugs that seriously affect a kidney, liver and other organs state.

As a consequence, drug dosage should strictly conform to specific features of an organism. A more than required drug concentration in blood not only destroys internal organs but also deteriorates the symptoms of the disease which such drugs were prescribed to cure. However, less doses do not make a therapeutic action but a toxic effect is present all the same.

In physical activity an active ingredient concentration in serum changes too. It is especially important to know the level of antiepileptic agents while combining two or more drugs, in pregnancy and breastfeeding, in taking contraceptives, during periods, etc.

By conducting drug monitoring and EEG recording simultaneously, we can keep track of whether therapy is correct or not in a reliable manner.

Therefore, we purchased a ward for video EEG monitoring and polysomnography, including two units for long-term portable mobile Holter monitoring, a device for determining a drug concentration in blood, a remote view station, software that allows performing data decoding and interpretation as accurately as possible.

Given that respiratory disturbances affect our patients rather strongly, we acquired a body plethysmohgraphic cabin and gas analyzer, as well as a stress monitoring unit to determine a load tolerance of the body.

All the equipment is of superior quality manufactured in the U.S. and Germany. I won’t say how much money it cost for us. Almost not a single bank agreed to finance a medical project of such kind. What we had to do was to pawn the property and assume a burden of exorbitant interests. And the process of loan formalization and documents execution is a story for a separate book!

A position of many our coryphaei – from full indifference to open sabotage – was quite unclear. Sabotage meant clearly envy, fear of competition. And such people’s reaction was more to my taste: if it has touched you to the quick, it means you’ll start to act too! But indifference is something hard for me to understand.

It is against this background that you start to treat warmer such people as Flora Akanovna Musabayeva, Head of the Nervous Diseases Chair, Kazakh Medical University.

Flora Akanovna is one of few highly-qualified neurologists who never stop and are in search of anything new. Not blind trusting but analyzing thoroughly and questioning all information. Only after we had presented specifications for compliance with the world standards, Flora Akanovna supported the project with her whole heart.

It would be no exaggeration to mention high evaluation of her merits to both Kazakhstan neurology and our project. And her selfless assistance in uniting neurologists and neurophysiologists deserves even greater respect. The Health Professionals Fraction within the structure of Public Association SVS Nevro was created with her help and under her supervision.

Below is some information about this fraction.

We gained confidence in the necessity of our venture, a contract for equipment was finally signed, and the equipment was delivered to Kazakhstan. But it turned out to be only half the deal. A personnel problem appeared on the agenda.

It is a sense of appreciation and pride that overwhelm me for the team created as a result of a selection process!

In the first place, it’s Aizhan Shinbulatovna Zharylgapova, Head of the Neurophysiological Department, Olga Yurievna Smirnova, Deputy Director of the Company, doctors: L. Kuzina, A. Mestoyeva, Y. Akchurina, I. Sitnikov, E. Bolozeva.

Under the wise supervision of A.S. Zharylgapova, our team practically without a rest learnt how to work using high-technology equipment, and they continue to improve qualification on an ongoing basis. It is enough to say that for the first 5 years there were published over 30 articles and papers.

Based on SVS Laboratory doctors of the Asfendiyarov Kazakh National Medical Academy and Almaty Physicians’ Continuing Education Institute are working over doctoral and master’s theses.

Our doctors participated in many international congresses and symposia. But the main thing is thousands of patients who have been rendered competent assistance!

I would like to express gratitude to our doctors from the Family Medicine Department: Zarina Babayeva, Bakhytgul Ischanova and now-deceased Vsevolod Dmitriyevich Mulayev.

Legends can be composed of Olga Yurievna Smirnova. Possessing a stunning capacity for work, she has passed the whole way – from a nurse and ward attendant to a deputy director of medical company. She speaks four foreign languages and Kazakh, has skills of working with any diagnostic equipment, remaining a charming woman and caring mother! And all this – in her not full 27 years of age!

Unfortunately, the whole project has to be subsidized. And if not these people, giving up to 70% of the money they earn to repay the loan, we would have long ago stopped to exist!

But what admires me most of all is self-sacrifice of the employees who have no medical education: Chief Accountant Aliya Bektureyeva, Secretaries Dinara Sharipova, Amina. For weeks they had not left working places. They fell asleep at their work desks, they were sinking with fatigues and overstress. This is a genuine display of humaneness – work for the sake of patients and not for a pay! A deep bow to them all!

After I had interviewed both patients and doctors, I found out that doctors did not always know about patients’ needs and hopes, and patients were not aware of their rights and were far from doctors.

It is for this reason that a plan of the Public Association’s structure appeared. It has two fractions: the Health Professionals Fraction and Patients and Their Families Fraction.

As a result, everything going on in the doctors’ world reaches patients at once, and patients’ questions are immediately communicated to physicians.

A main goal of the Public Association is to consolidate patients suffering from epilepsy and convulsive syndromes. Among main objectives are to achieve a maximally correct approach to treatment and rehabilitation of patients who suffer from epilepsy and convulsive syndromes, and also economic and legal protection of the patients’ rights.

The following has been performed during the period of Public Association’s activity:

  • All subdivisions of the Public Association were organized, registered and structured:

1. Board of Trustees

2. Directorate

3. Patients Fraction (www.svsnevro.kz)

4. Health Professionals Fraction (www.svsnevro.kz )

5. SVS Laboratory for Epilepsy and Convulsive States after V.M. Savinov (www.svs.kz )

6. Hi-Tech Global technical support service (www.hitech.kz)

7. Information Service of Kazakhstan SVS Medical Portal (www.svsmedical.kz)

8. Faculty of Postgraduate Education in Neurophysiology and Epileptology (www.eeg.kz)

9. Epileptology School for Patients and Their Families.

10. Organizations and representatives in Shymkent, Karaganda, Astana, Bishkek, Aktau, Kustanai and other regional centers of Kazakhstan.

  • Information, technical and financial support was provided for opening of nine cabinets and centers of video EEG monitoring. The personnel of these cabinets and centers was trained and worked on probation based on our Faculty of Postgraduate Education in Neurophysiology and Epileptology.

  • Epileptology schools are conducted twice a year for the personnel of SVS Clinic and Kazakhstan’s doctors, half of classes – with the involvement of overseas professors.

  • A 24-hour information hotline operates to support patients with epilepsy (+77019125249 and +7 7272349202)

  • For 10 years the Public Association has responded to 4,500 patients’ requests, and legal, psychological and organizational support has been provided to allow them improving quality of life.

  • For 10 years the amount of about USD1,700,000 has been raised to develop, support and popularize epileptology. A share of financial aid provided by pharmaceutical companies was no more than 4%. It was mainly an assistance of enterprises and private investors.

  • There were held 15 conferences for doctors from Kazakhstan and Central Asian countries.

  • The Faculty of Postgraduate Education in Neurophysiology and Epileptology was organized where fundamental and in-depth cycles to study EEG, EMG and video EEG monitoring are held with the involvement of foreign experts. For 4 years 82 doctors have been trained.

  • There were published 114 articles that popularize the issues of epileptology in newspapers and magazines.

  • 21 TV programs were broadcasted on various Kazakhstan’s channels, and also a TV project of the cycle consisting of 7 TV programs “What Is Epilepsy?” was implemented.

  • With the help of Sanofi-Aventis firm 8,000 brochures for epileptic patients were published that illustrate how to live with this disease correctly.

  • A library for neurologists, neurophysiologists and epileptologists was arranged that comprises about 1,500 monographs, textbooks and reference books, as well as about 2,000 articles in an electronic format and 30% of printing works are in English. Currently, any SVS Nevro member and doctor of Kazakhstan can use the library online.

  • In Almaty a Follow-up Observation Department was organized for patients with a central nervous system injury in the neonatal period with paroxysmal states.

  • Popular science lectures and seminars are conducted on a regular basis for doctors of various profile (in 28 cities and populated areas for 5 years) and for non-specialists (42 activities in schools, enterprises and higher educational institutions for 5 years).

  • There were held 6 concerts and charitable events to collect funds for patient treatment abroad.

  • There were held 9 exhibitions of drawings and handicrafts made by children suffering from epilepsy.

  • More than 300 free consultations were provided for epileptic patients where specialists from Russia, Germany and Israel were involved in.

  • More than 200 Patients Fraction members received a 50% subsidized examination in clinic “SVS Studies of Epilepsy and Convulsive States after V.M. Savinov”.

  • An agreement with 12 medical institutions was signed for granting privileges in examinations taken by our patients.

  • Support is provided to doctors working over their theses (4 theses).

  • More than 35 patients and their parents were placed in a job.

  • With the assistance of Public Association a drug monitoring laboratory was opened, such laboratory has capabilities for determining antiepileptic drug concentration in all cities of Kazakhstan.

  • Scientific research work was carried out to create a generally administered drug catalogue where drugs may have relative and absolute contraindications in epilepsy.

  • Health-improving and adaptive tours and picnics are held for the Public Association members.

  • Computer literacy training courses were organized for patients suffering from epilepsy. Every year Hi Tech Global company provides a charitable training for 18-20 trainees.

  • Internet-based TV bridges were arranged with CIS and non-CIS countries, as well as with 10 cities of Kazakhstan. Such Internet-based TV bridges make it possible to consult patients online, without leaving the country and city, and to solve many organizational issues.

  • We have become a prize-winner of the Republican Contest of Social Ideas and Projects.

  • A Chair of Functional Diagnostics providing a neurophysiology and epileptology course was opened jointly with the Russian-Kazakh Medical University.

  • The Board of Trustees was organized consisting of representatives of businesses, the intelligentsia and ordinary public. It is thanks to these people that we have got an opportunity for not depending 100% on pharmaceutical companies and developing many social projects.

  • In 2013, the Public Association became a full member of the International Bureau for Epilepsy (IBE).

                  Public Association’s Perspective Projects

The Association’s core activity is aimed at developing and implementing socially significant projects.

  • Project “Organization of Developmental Center for Epileptic Children”.

  • Project “Formation of Correct Attitude toward Epilepsy in the Society by Communication via Mass Media of Response to Epilepsy and Similar Diseases Symptoms”.

  • Project “Creation of Interstate (Russia, Kazakhstan, Kyrgyzstan, Ukraine) Virtual Full-Time University with the Chair of Functional Diagnostics with the Course in Neurophysiology, Neurovisualization and Epileptology”.

In correct treatment most patients are not miserable disabled people but fully-fledged workers. Therefore, it’s necessary to create own enterprises capable of helping themselves and other people. This is a central link of the whole chain!

It should be noted that many my friends and businessmen responded to our appeal for help. And more than USD500,000 were allocated for payment of expenses for various projects. Thank you so much to them all!

Many things more can be described because every patient is a fate and a whole story.

Recently, I’ve been in a study tour around Kazakhstan. I saw vast spaces, tremendous distances. Asking my colleagues questions about our problems, I became more and more convinced in the need in creating a shared information network.

For example, we are holding a workshop, and only those who attended it will obtain the knowledge. Andwhataboutthousandsofcolleagues? What about patients?

This is a reason of why we are developing one more parallel project. It is Kazakhstan SVS Medical Portal (www.svsmedical.kz).

Even now more than 15 web-sites of various clinics and public organizations have been connected to it. It has a constantly functioning forum for doctors and patients.

Creation based on the portal of full electronic version of magazine “Neurosurgery and Neurology of Kazakhstan” (NSNK — www.nsnk.kz) is actually a real step in promotion of Kazakhstan science and association of neurologists, neurosurgeons, neurophysiologists and neurovisualizers of our country.

Now the project exists in Russian only. And this fact limits its capabilities and usefulness. First, in 5-10 years the Kazakh language will become ingrained in document management. Especially, on the local level. It means that a part of information in Russian will again be in demand not by everyone. Second, it’s extremely important even from the point of view of patriotism. However, although many companies provide a sponsorship, there’s all the same lack of funding for maintaining a staff of translators and analysts of medical periodicals.

We are like oysters – closed in own shell. We conduct researches and make conclusions on our own. Of course, it’s good. But why to invent a bicycle many times?

Only few of the doctors attend international congresses and seminars because it is expensive in terms of money. And therefore, the international experience sometimes reaches us much time later.

And by having an opportunity for taking knowledge from a reliable source, we would not do harm to patients because of lack of knowledge, or yesterday’s knowledge.

For example, materials of the conference held in Aktau could be discussed by physicians anywhere in the world.

To protect the doctors’ rights and to organize a consistent movement for professional development, we have created the Association of Neurophysiologists and Epileptologists of Kazakhstan.

Within this Association extended councils of physicians are held every month where problem patients are discussed. The Association members prepare reports on interesting topics, and specialists of related professions are invited as well.

The SVS Laboratory for Epilepsy Problems, Convulsive States and Family Monitoring after V.M. Savinov (www.svs.kz) has become a scientific and clinical basis of the Kazakh Medical University, Kazakh Scientific and Research Institute of Neurosurgery (www.nsi.kz) and state educational institution of higher professional education Russian State Medical University of the Federal Agency for Health and Social Development.

Epilepsy is an insidious, dangerous and many-faced enemy. But a more dangerous enemy is illiteracy and indifference! We try to overcome the first one, but to fight with the second evil, we need a help…

We will welcome any help and any cooperation.

We are not beggars with a hat in hand! We are half-blinds, wandering in the dark.

Only by joint efforts we have a chance to recover our sight.


He has a yellow belt in aikido, is a karate champion in own weight category in Almaty, is a member of a hip-hop amateur club, riding club, is an organizer of a band, plays a percussion instrument, bass guitar, rhythm guitar, lead guitar and synthesizer, goes in for boxing, swimming, billiards, and based on a grant entered the Civil Aviation Academy – all this is about my son who I told you about in the beginning of this article. I thank God for prompting me in time how to struggle for own child!!! And it’s terrible even to imagine if I hadn’t started treatment in time, or had given way to panic and started to make wrong steps!

It was incredibly hard and difficult! Now we are not alone! However, only altogether we will be able to win. Never give up!


Sergey Viktorovich Savinov

  • Chairman of the Board of Public Association SVS Nevro,
  • Member of the International Bureau for Epilepsy (Movement of Doctors and Patients Against Severe Nervous System Diseases and Epilepsy www.svsnevro.kz),
  • Director of SVS Laboratory for Epilepsy and Convulsive State Problems and Family Monitoring after V.M. Savinov (www.svs.kz),
  • Director of Project “Faculty of Postgraduate Education in Neurophysiology, Neurovisualization and Epileptology” (www.eeg.kz),
  • Member of Children’s Neurologists Association in Kazakhstan,
  • Member of the Board of Association of Neurophysiologists and Epileptologists of Kazakhstan (www.nsi.kz),

Editor-in Chief of Kazakhstan SVS Medical Internet Portal (www.svsmedical.kz)

Member of the Editorial Board of “Neurosurgery and Neurology of Kazakhstan” Magazine.

For any questions please contact:

+7 (7272) 34 79 72

+7 (7272) 71 85 73

+ 7 701 717 0003


Medical Portal www.svsmedical.kz