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small, well, about the size of a palm, and it seemed to continue to grow, as if the tumor was gaining volume along with me, when the size of the tumor became critical? for the last 6 years , the tumor has been giving me such discomfort that no matter how i can’t help but be in society, i have a big complex, how much does it weigh now according to your feelings, at least 6 kg, size... somewhere if you fill a six-liter bag with plastic water, something like this. does the growth hurt if you touch it? there is no pain, if you touch it, but when i move, for example, when , let’s say, i can’t jump, run, that is , if it shakes, then it brings a painful sensation, that is, the skin stretches, stretches inside, since the tumor is vascular, it stretches inside. brings

pain, let's see what this tumor looks like now. nadezhda, can you imagine how hard it is for evgeniy to deal with all this every day? well, i can’t imagine this at all, but have you already tried to somehow fight this, or are you, well, just now thinking about it? no, they tried, by the way, tell us how you tried to fight when she was already nine years old. i gained enough volume, well, mom, and approximately what was the volume by the age of nine? about a liter, maybe , because my mother had already begun to understand that the tumor was growing, that is, something had to be done about it while i was little, at the age of 9 i had my first operation, it was then only on the lower back, the tumor , the operation helped, and it was completely removed, but after 2 years, again at this... place

, a subsequent operation was performed on the lower back , too, but part of the tumor had already descended to buttock, had already begun to descend, well, that is, at the age of 11 they had an operation, the next operation that took place, then the tumor had completely descended onto the buttock and had already reached quite such a size, that is, it had to be removed, and what size is about four kilograms . i had it removed and after 4 years it had already begun to grow with a more intense growth rate, but after 14 years it turns out to this day, it’s all that you see now, this is the result of 14 years of growth, but to summarize how many operations do you have? i’ve already had four surgeries, but what diagnosis did the doctors give you? different doctors,

there were different diagnoses, hemangeoma, fibroma, myxoma, angeomyxoma, but at a consultation in 2021 they diagnosed me. neurofibromatosis, this is what neurofibromatosis is at the moment, yes alon, which of the diagnoses was correct? most likely this is really neurofibromatosis, and the picture is atypical, most often patients have more tumors, they can be subcutaneous, they look like lumps, they only appear in large numbers with age increase, there may be coffee-with -lait spots, there may be freckle-type spots in the armpits and groin areas, and there may still be damage to the skeletal system and organs of vision. neurofibromatosis is a group of diseases, they are hereditary, occur randomly, sporadic, and there are familial cases. they are characterized by a large growth of tumors, not simple ones, but from nervous tissue.

most often this is associated with a breakdown of a gene, a gene that is a suppressor of tumor growth; accordingly, when it breaks down, it begins tumor formation process. have you had similar cases in your family? no. alena, why is there a dark spot on the tumor? hyperpigmentation is typical for such patients. these can be either single spots or more than six throughout the body, but most often it is the back, the chest, and tips may appear with age. alexander, but evgeniy said that he was operated on four times. why does the tumor continue to grow actively? well, for the reason that this diagnosis is a relapse. because the tumor itself grows from the membrane of nerve cells, yes, and we cannot a priori remove the nerve cell completely, so it will continue to produce this new growth. magomed, is any other treatment possible

besides surgery? unfortunately, at this stage , treatment is only palliative, that is, improving the quality of life, that is, surgical methods of treatment are used. from neurologists when some neurological symptoms occur. evgeniy, do you have any concomitant diseases? yes, i have, uh, i have chronic osteochondrosis, constantly, well, constantly, back it hurts, yes, it’s just impossible without it, that is , it’s hard to get up in the morning , it’s hard to lie down, it’s also uncomfortable to drive a car , you always have to somehow contrive, put a pad under the other buttock, that is, or somehow, well, in different situations. differently elena, and those back problems that evgeniy talks about are inevitable, the load on the spine is enormous all the time, plus the growth of the tumor affects not only the tissues that we see, but the tumor can also deform, so to speak, the vertebral trunk, naturally, all this causes such

great, so to speak, harm to health and such a load is not symmetrical, of course, the load is asymmetrical, the only thing you can do to help yourself in this case is good orthopedic underwear, like... which will help in some way ... then how to support in general there are such cases, well, with a specialist , i think you can try to pick up either to order or to order absolutely right evgeniya and you received a disability yes in 2019 when i already lost the chance to get a job, but in the field in which i worked, that is i couldn’t pass the medical examination, i decided to apply for disability, where do you work? by profession, i am an engineer in mechanical engineering, but what i do is... fabrication of metal structures, welding, installation, that is , i am self-employed and the medical examination forbade you from actually working, well , i don’t pass, but what type of disability group is the third, you receive a pension , i receive a pension of about 13,000, after receiving

disability you do not work at all, well , only yourself, i have my own premises, where i am alone, i work calmly, as i would have done, i went and installed what the man needed, alexander. considering the illness, evgeniya, this is a very dangerous job, of course, these are restrictions that can lead to trauma, so theoretically he should get out of the situation, say, change the type of activity, choose a safer job, why not? evgenia, how are things going with your personal life? my girlfriend and i have been living together for 6 years, you started dating when there was already a tumor on your body, how does she feel about it? i don't think anything will happen, but still a person can, well, change his mind, but

also burden him with something, you are afraid of burdening her, well, yes, that she will have two on her hands in the future. a disabled person , this is the worst thing, you are afraid that the disease will be passed on to your children by inheritance, because of this tumor, you had to forget your observant life, well, there is no observant life, you didn’t have to forget... to be, but the tumor naturally causes discomfort in this plan. alyon, how does neurofibromatosis affect reproductive function? neurofibromatosis itself does not affect reproductive function, conceiving a child, bearing it are the same as for people without this disease, but this is really a disease that can be inherited by children, yes, the risk is indeed high, but there are methods that allow you to avoid which ones, there are two options, the first is when the children were conceived naturally and before the tenth eleventh week we will take some

material, this is an invasive method, a piece of chorion and test it for the mutation that the dad has. the second option is eco, when it is possible to make an embryo in vitro and check it in advance for the presence of mutations, make sure that only healthy ones are added and a healthy baby is born. evgeniya, how does your girlfriend feel about the fact that you don’t... again, if i don’t do this now, yes, if i don’t have an operation, in 5 years i

won’t even be able to get up at all , the tumor is growing so quickly, and to be honest, evgeniy, after all, you are not afraid that sooner or later your girlfriend will simply get tired of this waiting, she will leave you, well, i wouldn’t want that, of course, i love her very much, yours your chosen one also loves you, despite her illnesses, and dreams of a strong family and children, our guest... yulia adulmanova. hello, presenters, dear studios. hello. how and when did you meet evgeniy? we met evgeniy on june 23, 2018. my friend and i were walking in the park, it was very cold, we went into a cafe. there, in the cafe there was a cage with rabbits. that is, we asked the little rabbit to love him so purely. after a short time, evgeniy came. their friend, they sat down at the next table, i’ll say right away, evgenia first i paid attention to this rabbit

, because the little rabbit was fluffy, that is , he got hooked, we started talking, communicating, that is, we had a dialogue, and evgeniy asked for a rabbit, naturally, i showed him this rabbit, since then we have not we are parting, and you immediately noticed that he has health problems, no, but evgeniy sold the tumor, he told me, showed me on the second day, so that later if something happens, so that i don’t tell him that why... you told me earlier i didn’t say it, but i told it, i showed it showed it too, how did you react? i reacted well, i’ll explain why, because my principle of life is to help your neighbor, that is, my parents gave it to me, that is, you need to help your neighbors, i immediately thought that good, okay, we ’ll try to cure it, that is, operate, that is, i didn’t know all this, well, you didn’t know what kind of diagnostician this was , i didn’t know, i thought, yes, this is, i thought, this is a tumor, you can just remove it, how can they remove a cancerous tumor and live with this, but since then it has passed - many years the tumor has become more, she still doesn't bother you? she confuses me, of course, i really want her

to be operated on, because i see my wife’s condition, how he behaves, i understand that if this continues, she will simply grow large, he will simply lie down, or he will simply become disabled , or lie on the bed, that’s all, but it doesn’t affect your attitude towards eugene in any way and doesn’t push you away, no, no, i will fight to the end, when you said that... you were raised as a helping person to others, you first fell in love with evgeniy, or is it just this feeling of well, the rescuer stuck you next to me when evgeniy and i met in the park, but the spark went through for me, that is , to me, well, initially, it’s like a person accepts the same clothes outwardly, that is, outwardly i really liked him when it was very cold, he was wearing denim, a long windbreaker and a cap, that is, visually it was absolutely not visible. yes, initially i immediately liked him, that is, his manner of behavior, communication, appearance, that is, and only then i

i realized that i will help him, i will be with him to the end, you know, i look at this couple and i understand that in a normal relationship, about love, yes, if we are talking, then how can love stop, because a person has - that is, there is some kind of illness or something else, is it possible to turn away if you love, well, for me, no, that’s why i didn’t push you away. what a great guy! alexander, what do you think? i look at these two wonderful people, i have such a true admiration for you, despite such a diagnosis, yours, evge.

evgeniya, are you currently undergoing any treatment? yes, i was seeing a neurologist and an oncologist. recently, before the new year, a situation happened to me that was, so to speak, non-standard. on december 27 , 1923, me and two of my friends had not seen each other for a long time and decided to go to a cafe in the evening, sat down at the table, there were a couple of girls in the cafe. a friend of mine came up to us, sat down at a table there, a company of young people, strangers, came in behind us, there were four people, one of them sat down at our table, one of them was an old friend of mine, this although all the tables were free, the second young man sat down behind him at another table, that is, at another, they sat down themselves,

no one called anyone, one stood next to the table, the fourth went somewhere, i don’t know. and that means, when this young man , who sat down at our table, began to get up, the second girl walked behind with coffee, brought coffee, this young man stood up and, therefore, knocked over the entire tray with hot coffee and on his face, on his clothes, we asked him politely for this young man to ask the girl apologized and paid for the order, bought them the same coffee there, he himself didn’t even... he didn’t change anything at all, that is, on the contrary, a verbal altercation began, that is , they asked to go outside to talk, on the street i also explained to the young people, well, this is not like a man, i went back into the cafe from the street, where i already saw that one of my friends was being hit, i began to approach them, well, to try to separate them, but before i could get there, that

is, me too already from behind, as if someone grabbed me by the jacket from behind and knocked me down. blows rained down from my feet with their hands and feet, they started to beat you completely , four of you were beaten by several people, and by four of them, including a metal chair flying through the entrance, and in the process of beating me , well, i lost consciousness and came to my senses, that is, this went on for quite a long time , when i already realized that it was okay it smells like something isn’t right anymore. i shouted that guys, i’ve had enough of my surgery. well, what did i hear? we don’t care about your surgery. what injuries did you receive? fracture of the nose on both sides, internal rupture of both lips, bruised ear, concussion, multiple head hematomas, extensive hematomas of the left temple area and extensive hematomas of the cruciate region, that is, i was hit precisely because of the operation; the video showed

this hematoma, that is, the blow came from either a chair or a foot. in the lower back, where it caused damage to blood vessels or veins, and internal bleeding occurred, this is a hematoma, according to doctors, it had a volume of about one and a half liters of blood, what a nightmare, the hematoma was inside, yes, no, that is, it did not open, if it were open, they said that it could have been quite, death could have occurred, of course, but what first aid can be provided in such a case, in this case, the most important thing is that

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he was served, but he voluntarily accepted the command and detachment during an emergency at the cold storage plant, we must save everyone, goats and fools, new horizons, five minutes of silence, new horizons, eh, guys, we have a good profession, today at 22:10 on ntv . beyond. this is beyond the bounds, a man suffers from a huge tumor on his buttocks, which is growing every day. yulia, are you afraid that evgeniy will damage the tumor and it will end in tragedy? for us, the back is a sore subject, if only not hit, as long as it ’s done, as long as no one touches it, that is, for us this is a very terrible disease, because a person who is sick, it’s very difficult for him, who is nearby and empathizes, knows every day

his condition, how... he has to live with this , how others look at it, the reaction , that is, they ask us something, that is , some comments, naturally i ’m trying to smooth out all this, because i understand that i can’t tell everyone this, yes and it will also be unpleasant for my wife, just like well , like a man, he, that is, tells me not tell me every day that you worry about evgeniy, help him, how you cope, when evgeniy and i started dating, we had a problem. he always carried a bag with him, that is, he covered this tumor for some reason, that is, he disguised it so that people wouldn’t look again, we only go out in the evening, during the day we don’t go anywhere, i say, let’s go for a walk, no , either we drive a car, or in the evening we walk, everything, little by little, every day, that is, i looked for clothes, if, for example, i went to a tailor, i go in advance in the studio, i negotiate with the master , i say, i’ll come with him, don’t pay attention,

as if this is a normal phenomenon, you, take your measurements, because there are no things as such for him, that’s it, we’ll go to his wife, that is that’s it, we start putting clothes on, zhenya , that is, he forgets that no one is looking at him , he starts looking at himself, zhenya goes to the store on his own and doesn’t go, plus shapewear, that is, we pick out corrective underwear for him, because it ’s hard for him to carry it , it’s hard for him to walk at home, when he just comes out of the bath, in the bath i tell him i also help, that is, to go out there and go in, that is... evgenia, an amazing woman, i can’t even imagine what, what’s inside you, this is this kind of mad love, or really a real desire to help, well, to say that i’m shocked, i don’t even know, i can’t even find a word , you know, i’m just asking you, i ’m asking you to believe that everything

will work out for you. that everything will be fine, so i look, of course, at zhenya, he doesn’t even raise his eyes, i imagine how painfully exciting it is, you guys have feelings, here believe that everything will work out for you, yul, and what kind of future with evgeniy do you dream of? i dream of waking up one fine day so that my wife’s buttock will be normal. a straight back, there was no tumor, so that we would have two healthy children, after all , we dream of having two children - a boy and a girl, and so that all this would be forgotten like a bad dream. is there no fear that the father’s pathology will be passed on to the children? yes, apparently god loves us so much that god took it away that we haven’t had children yet, because with this disease, if one of the parents is sick, this is a 50% transmission of a genetic disease

to a child, only through ico, and... i hope that we will have healthy children, let it be eco, but there will be children only from jeni. alen, if a person has such a genetic disease, if it is confirmed, can the ico procedure be performed?

he was in special clothes that hid it, no, he was in a car with a window , they waved to each other, everyone got to know each other. when my sister told about evgeniy’s problem, when my sister had already come home, that is, evgeniy had already left, she already told me that there was such a thing problem, but i asked you not to emphasize it, not to look in this direction, not to ask how you felt about it, i thought, why him, well, there are others. there is a healthy one, but she does not have her own life, that is, today she is with him all the time, like a mother with him, she herself will get sick, she herself will have a fever, but if zhenya calls, she runs to him, you tried to dissuade her from this relationship,

well, of course i talked about it, she says that she loves him very much, alya, you have your own life, i have my own life, i chose him, and it doesn’t matter to me, thousands of people will tell me, no, i will say yes, i will fight for my happiness. that’s why i’m here today , hope, aliya’s position can be understood, and her sister can be understood, but it can also be understood that each person needs to take care of his own life, and not shift attention to others, trying not to look at his life, and this also happens, of course , everyone chooses their own life, even if a person flies headlong into chaos, this is his path, we must also respect this position, i think so, victoria, are you worried? sisters, is yuli clear? most likely understandable , because i myself am an older sister, i always worry about my younger sister, yes, about her relationships, about her personal life when she shares with me, but uh, i would like to turn to you, you

understand that your sister, in principle, she is happy, how many women do you know in your environment who live happily with men, today it’s like such a big enough problem, or maybe, or i think... that yulia is unhappy in her relationship with evgeniy, do you think i’m not i will say that she is unhappy, but the only thing is my experience, that if there are children, and of course, well, i want healthy children, a healthy man for my sister, that she will face the same problem, that is, why am i saying this, because today, when there were refusals from hospitals, depression no longer began, yulia automatically... it also begins, accordingly, she, roughly speaking, puts a cross on herself, she does not take care of herself, she has a job, zhenya, work , zhenya’s hospital, they’re looking for ways out, and i’m worried what if there will be children, which will be the same, you see,

evgenia, and you really often fall into depression, before meeting yulia, i was in it, yulia knocked all this depression out of me. aleya, what was the most difficult period in your relationship? just from my memory, he had to go around five clinics , he calls and says: one was refused, the second, the third, the fourth, the fifth, and we are sitting, we were just all in a stupor and accordingly, when zhenya arrived , there was not just depression there, there he was just closed up. this period, my sister is in tears, zhenya is withdrawn, yes, that is, they both began to experience terrible depression, that is, they simply gave up, and i watched this picture, and accordingly, and also to

some extent i, too , already had a downcast face, julia, at that moment you didn’t think about breaking up, never, at the moment when zhenya arrived from the hospital, i came to him, that is, we had such a picture. we didn’t see him for a week, that is , i went in, that’s it, he tells me, why did you come, i told you, that’s it, no more come, at that moment his parents, father and mother supported me, he wanted you... to leave him, yes, he told me, like go away, and now i’ll just remain a disabled person with my own sore, with my own, i’ll be there lie with her, because in his understanding that everything will not operate on him, she will grow large in size, or a stroller, or just a recumbent lifestyle, you will find the best in yourself, i know that you deserve better, what it is, when a loved one drives you away, it’s very hard, for about a month, i guess i was trying to achieve him, evgeniya, and you didn’t think that... at that moment i was probably just in

such a state that, on the contrary, i wanted to protect her from pain, from a situation in which it would be even more painful, i just wanted to protect her, probably from that’s all, well, i didn’t think about myself, but thought about her, probably more, you didn’t want her to waste her life on you, even if it hurts, but then it will be easier for her , just everything, svetlana, you can somehow avoid it this disorder, how to cope with it in general? but i can’t imagine such a picture when your loved one is persecuting you, yulia is doing the right thing, she gets upset, worries , but does not leave, she is not persecuting you because she doesn’t love you, she is persecuting you because she is afraid for her future, she doesn’t want to burden herself, to make such a burden for yulia, yulia is doing the same she knows she understands that he’s not driving because they have to break up or he doesn’t like her there, it’s such a concern for her, you know, and yulia, in turn , takes care of him, only together. everything will work out, only faith, as vera said,

absolutely, yu, how is your relationship now? things are going well, now zhenya understands that only the two of us in a boat can sail the sea, only together, and you can’t imagine your life without yulia, no, we visited you , let’s see the plot, evgeniy kozlenkov and yulia adulmanova live in ufa in a small two-room apartment , to ease the pain, a woman

makes targeted compresses to her lover every day, it hurts, a little, everything, everything, everything, everything, the men complain, because of the tumor, he and yulia have to sleep in different corners of the sofa, otherwise he can't get comfortable, i i fall asleep in this position so that the tumor is located, not hanging, on... the sofa, that is, it’s easier for me that it doesn’t hang on this side, on this side, i fall asleep on my side, like this, in public, evgeniy tries to hide his delicate problem, all his sweaters, trousers and t-shirts are two or even three sizes too big, he often has to sew clothes to order, in addition to this, the man wears shapewear, they support, the swelling does not pull, there is less pain , there is less discomfort, that is, i feel like...

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to know what’s wrong with my husband linda lapinge ingrid glue sergei zharkov sasha. the stasi is in serious trouble. alexander gorbatov. i will find you and kill you. gdr. premiere. today at 20:00. beyond . this is beyond the bounds. a woman dreams of giving birth to her beloved man, but he is afraid of passing on a terrible genetic disease to her children. svetlana, how can your loved ones accept a choice that they don’t like, the choice of your relative, brother, sister. well, that's the choice. choice, sister, of course, yes, of course you can understand, she is worried, worried, but we cannot say for sure that julia will meet another man, that she will be absolutely happy with him, how do you know that julia will meet a handsome , a beefy brutal man, and he will forgive , change from left to right, she will say

that everything is fine with me, well, because she is married, and because children were born, perhaps there are already some obligations, who said that she is from it will be happier, because if she did you meet evgeniy? and not knowing then even that day what, in principle, awaited her, yes, she fell in love with him for some qualities, well, why should we give up on eugene now, no, of course, but if you love your sister, well, try to accept him, unite together help together, yulechka, at the beginning you made such an impression on me of self-sacrifice, then i realized that this is no, love, i don’t know, and i don’t know what it is, what a miracle. this is more than love, yes, thank you, thank you to your parents, thank you, today i just became convinced that russian women... know how to love like no one else, god forbid, if you have children, and this

diagnosis, yes, will pass you by, another question, we understand, yes, who will bear all this burden, spouse, potential children, will fall on yulia, and what to do, i understand what you are talking about, but society, how does it look at your tumor, will you have children or not these children, but do you exist? you don’t have to live the way some average people live, evgeny, besides yulia, who else supports you, your parents support you, it seems to me, your mother, as soon as it all started from that day and there is not a day that she doesn’t worry, she constantly worries, you are absolutely right, evgeniy, your mother blames herself for your suffering, our studio valentina kozalenkova, hello! valentin, why do you think that your son’s illness is your fault? well, i got sick at

the very beginning of pregnancy, with an ordinary cold, i didn’t go to the doctors, i thought, well , an ordinary runny nose will go away, i was very afraid of harming the pregnancy with medications, we didn’t take any medications, no, that is, you associate this disease with your sons, namely with that episode, with that cold of mine, yes, because... it was an or virus and it very much, i later read a lot of literature, it has a very strong effect on the distribution of fetal cells. alen, can a virus provoke such a gene mutation? the virus is indeed one of the mutagenic factors, but i want to convince you of the opposite: the virus is not always the cause of some genetic damage, sometimes this happens simply because it happened that way. it's not your fault that your such a wonderful son has us all under great impression, such an illness, and specifically, if

we speak for this diagnosis, it is really most often just a violation of embryonic development, but not due to a viral load. elena, well, let's dispel all doubts right away, if a woman gets sick during pregnancy, she needs to urgently go to the doctor, even with a cough, with a cold, is it necessary? of course, it is better to be under supervision, for one simple reason, like the first one. the period of pregnancy is the most dangerous, it is the most gentle, in fact, women should be given maternity leave not in the eighth or ninth month, and the first 3 months, which are the most dangerous , every nervous shock went wrong, it hit me wrong, well, valentina says, she was afraid that they would prescribe some kind of medicine, doctors know which group of drugs is allowed, which group of drugs is not allowed, and many pregnant women make a huge mistake when...

wow, valentina, how did the pregnancy proceed in general? absolutely no complications, everything is fine, i was born for exactly 9 months, the birth was good, the boy was born beautiful and completely healthy, without any flaws, the tumor began to grow immediately after birth, a coffee -colored spot formed, but the spot was there right away, but there was no pigment, not right away, about four months this spot formed, it was large right away. the sacral area, the entire buttock, is it true that the doctors were shown this spot? yes, they say: this is a birthmark, there are no signs of a tumor

, or did it really look like a birthmark, of course, just a birthmark, without any puffiness, bulges, the skin was completely identical to normal, when did the bulge appear? there's probably more somewhere by the age of five, he began to have such a layer appear, as if... fat in the area of ​​the sacrum, we went to the republican hospital, well, the first thing was that it says, you need to cut all this out, completely the tissue, skin, cut everything out, and there this oncologist performed the first operation, she removed from the cross, well , a little more than a saucer, there was a tumor, how old was evgeniy, 7-8, maybe he was already going to school, he told us that he went through four operations, four we did, yes, the tumor came back every time, like you do you think your son can be helped at all

, i want him to be helped, it’s just... he was operated on four times, but they operate in such a way that they just take some part that can be removed, and they say it’s impossible about the other parts, about the rest, well, the first time they did it, they only took it exactly where it grew up, the second time they began to operate on him, he started bleeding and his blood pressure began to drop, they finished, they can’t finish it, and it’s as if it’s impossible to remove it all. right away, the doctors are telling you this, yes, but you’re not afraid, valentina, that now the doctors will also not be able to help your son, i keep thinking, i’m afraid, and i’m not afraid, and i want them to at least help as much as possible, you still hope that there will be that doctor who, i believe in miracles, i believe, that there will be someone who will say,

it’s okay, let’s get it out of here, let’s get it out of here, at least... to somehow make his life easier, so that he can put on clothes, so that this tumor doesn’t bother him. evgeniy was examined by an oncologist from the capital, that’s how it was. evgeniy kozlenkov steps confidently threshold of a moscow clinic. for 36 years, he has become accustomed to hospital corridors and examinations. in the office of oncologist surgeon andrei kulaga, a man tells in detail the history of his illness.

we see a large, very widespread tumor from literally the anterior semicircle of the right thigh, which passes to the gluteal lumbar region and reaches almost to the left half of the gluteal region and the left thigh. after collecting anamnesis, the doctor examines the patient. here there is dense, dense areas, here is soft, monotonous, it is here. there is a fragment of some heterogeneous structure , then the specialist finds out whether evgeniy has other café-au-lait spots on his body, café-au-lait spots are often localized in the axillary areas, in the groin folds, also the skin of the trunk, so -called lichen spots are also characteristic, growth on irises of the eye. evgeniy, you were examined, but you haven’t heard the verdict yet,

are you ready to hear the results of the examination? yes, of course you are worried. well, yes. yul, are you worried? very. are you ready for any verdict? ready. in our studio oncologist, andrey kulaga. andrey, hello. hello. how do you assess evgeniy’s condition at the moment? evgeniy has a rather serious illness, which, of course, burdens his quality of life and daily care. and, of course, well... it requires indispensable treatment, since the patient’s psychological state is complex and physical. let's understand the disease, what's inside this tumor? this is a benign tumor in principle, which can reach enormous sizes, and it consists of quite fibrous even more huge, yes, even more huge, and it consists of fibrous tissue, nerve fibers and

various other, well, so-called extreme components. this is a certain type of tumors characteristic of this disease, this disease, as far as we now know, evgeniy was diagnosed with neurofibromatosis, and here there is a change in the gene, the so-called nf one, well, you are so careful about this diagnosis, do you not agree with this? yes, because evgeniy has not yet undergone genetic testing for the nf gene of the first or second gene, which will conclusively confirmed, today we can say 100% that this is the diagnosis. you can’t just have clinical symptoms, a sufficient number of clinical symptoms were not identified in evgeniy, except for this tumor condition, this is not enough, genetic testing is required, only after that we will make a diagnosis. can the tumor be operated on? the tumor can be operated on and should be operated on, of course, after the operation the tumor will stop growing? there is no way to say that the tumor will completely stop growing, because in principle it is necessary

turn initially directly to the nf1 gene and. two, which are, in principle, responsible for blocking tumor growth, and when this gene is broken, the tissue begins to grow continuously, this is already contained in the genome. that is why this tumor grows, grows, grows , it is impossible to say that it will stop growing 100%, but if the diagnosis of neurofibromatosis is confirmed, then after the operation, even if you manage to remove the tumor, it will return after some time, yes, but at all in a different volume completely differently, in more, less, in less, of course, more moreover, today there are clinical trials and they are undergoing, that is, surgery has not been exhausted, there are drugs that are currently undergoing clinical trials. in the future, perhaps, we will consider and recommend the use of targeted therapy for prevention, but how long such an operation can last, this is a complex procedure, in general such operations can last the whole

day, 6, 8, 9 hours, will the doctors be able to save evgeniy from the painful cargo, a specialist’s verdict immediately after the advertisement, be careful. my own daughter into my biological family , who abandoned her, i was raised by my aunt, my mother died, i found out that i also have a sister, they said that she died, i feel that this is my own blood, one

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to carry out reconstruction close this is the most difficult, i really hope that in the case of evgeniy this will work out, and let's talk about rehabilitation, it is long, difficult after such an operation, rehabilitation is difficult, it will take a month or more, you will take on this surgery, yes, we will undertake this operation, now we already have a plan defined in our heads on how to carry it out, most likely the operation will be performed in two stages, just for the formation... we will first conduct genetic testing to confirm the diagnosis of neurofibromatosis , so that in the future we can discuss the possibility of anti-relapse.