Sergei Belolovtsev family. The middle son of Sergei Begolovtsev got married
Epidermolysis bullosa or “butterfly skin” disease is today a genetic untreatable very rare and terrible disease. The disease is characterized by the formation of blisters on the mucous membranes and skin spontaneously or even with minor injuries: friction or slight touch can cause the appearance of a new blister. Most often, the disease manifests itself early in the baby’s life, but sometimes it manifests itself at an older age.
Epidermolysis bullosa comes in two varieties: dystrophic and simple.
Pathogenesis and etiology.
To date, the reasons why epidermolysis bullosa is inherited have not been identified. It is believed that mutational changes in germ cells, occurring due to genetic coding, lead to the occurrence of this dermatosis.
With a simple form of epidermolysis, blisters appear at the sites of bruises, mechanical injuries, pressure, and bruises. The disease most often affects boys. Bubbles of various sizes with hemorrhagic, serous-purulent or serous contents form on seemingly healthy skin, without previous or concomitant inflammatory changes.
Typically, blisters appear on the buttocks, legs, hands, feet, front surfaces of the lower and upper extremities. Bubbles appear infants maybe around the mouth. Less commonly, the mucous membranes of the genital organs and mouth are affected. The size of the bubbles varies from a walnut to a pea. The blisters quickly break through, revealing scarless epithelial erosions. In places of erosion and blisters, burning and itching are noted. However, this does not change the general condition of a person.
The Weber–Cockayne variant occurs in the spring and summer and is a special form of epidermolysis bullosa. The disease is characterized by the appearance of blisters only on the feet and hands in combination with keratosis and hyperhidrosis and keratosis of the soles and palms.
The formation of the hyperplastic form of dystrophic epidermolysis bullosa occurs while the child is in utero and manifests itself at the beginning of the baby’s life. In places of injury, blisters appear, and then erosions and ulcers. Subsequently, dystrophic scars are formed, often of a keloid nature. The anterior surfaces of the knee and elbow joints are most often affected. Bubbles and cortical-squamous layers appear in atrophic areas. After removal of crusts and scales, atrophic scar areas appear. In unaffected areas, the skin is grayish-pale, dry with white dermographism. Hyperkeratosis and hyperhidrosis appear on the soles and palms. The nails on the hands and feet are deformed and thickened. In a significant number of patients, the mucous membranes of the conjunctiva, genitals and mouth are affected. Bubbles located in these places quickly open. Erosions very often become superficial ulcers. While healing, foci of leukokeratosis and cicatricial atrophy remain. In atrophied areas, epidermal cysts may appear in the form of whiteheads. With this form of the disease, dental dystrophy, ichthyosis or hypertrichosis may occur. The disease worsens in summer time and has a benign course. Influenced by shoes warm clothes and hot baths, the disease can worsen in winter.
There is also belopapuloid epidermolysis, which manifests itself with the simultaneous appearance of blisters and miliary whitish papules. Papules merge into large diffuse foci with micropolycyclic outlines. Sometimes milia-like cysts can form along with the blisters. Most often, rashes occur on the hands and feet. Small miliary papules and milium-like cysts, which resemble leukokeratosis or leukoplakia, can form on the mucous membranes. Hypertrichosis and onychogryphosis also appear.
The polydysplastic form of the disease is much less common. It manifests itself from the first days of a child’s life as numerous large blisters with serous-hemorrhagic contents, which are located throughout the body and even on the head. The blisters are located deep under the epidermis. Scar changes lead to ectropia of the eyelids, deformation of the feet, hands and mouth. In addition to skin changes, patients exhibit dysplastic processes: xeroderma, hypoplasia of the gonads and esophagus, hypotrichosis. Imbecility arises. By puberty, the course of the disease may improve.
The Butterfly Children Foundation happened, perhaps, like all the most important things in our lives - by chance and unexpectedly. Alena Kuratova, one of the founders of the Foundation, could not even imagine in 2011 that she and a small team of caring people would have to create a Foundation to support children with epidermolysis bullosa (EB) from scratch. A successful marketer, a happy mother and no hint of volunteering. But everything changed dramatically after meeting little Anton, the butterfly boy.
Anton's story or how the Foundation was created
Seven and a half years ago, I accidentally came across a photo of a boy with epidermolysis bullosa. His name was Anton says the chairman of the Butterfly Children Foundation, Alena Kuratova.
"At Anton's interesting fate: the boy was born by a surrogate mother along with a healthy twin brother, whom his parents took, but Anton did not. The baby spent 10 months in the hospital and was in very poor condition. Anton was found by volunteers from a fund to help orphans. When I saw his photo, I simply could not pass by. This is an absolutely fantastic child, with fantastic eyes. I cried for three days, then I collected money from friends, called the fund coordinator and went to the hospital.
At that time, there were many volunteers who wanted to participate in Anton’s life, but for some reason I was lucky. Although I had never heard of epidermolysis bullosa, I had never actually done anything similar. And then it turned out that I started going to the hospital in Solntsevo, constantly bringing him bandages, medicines, and attracting specialists. Volunteers from all over Moscow brought me diapers and dressings, and I took it all to the hospital.
And in some unimaginable way, people associated with this disease began to gather around me. Mothers of butterfly children began to turn to me and another volunteer Natalia (Natalia Lazarenko, founder, member of the Foundation’s board) for help. Then it became clear: we need to do something about all this. So we registered the Fund to help children with epidermolysis bullosa.”
photo of the fund "Butterfly Children"
Epidermolysis bullosa is a rare genetic disease. The cause of the disease is a breakdown in the gene, due to which the body lacks a certain protein involved in connecting the layers of the skin. As a result, blisters and erosions form on the patient's skin spontaneously or as a result of mechanical damage. Such wounds need to be closed with special dressings, says a geneticist and expert Fund "Butterfly Children" Yulia Kotalevskaya.
In some patients, wounds also appear on the mucous membranes. People with epidermolysis bullosa are called “butterflies,” comparing their sensitive, vulnerable skin to the wing of a butterfly.
The disease itself is divided into three main types depending on the level of damage: simple, borderline and dystrophic. Most often, the disease is diagnosed at birth: on the first day, less often in the first months of life. Usually the child develops blisters that burst, erosions form in their place, and sometimes the child is missing a patch of skin.
The skin of butterfly children must be covered with special dressings that serve as a “second skin”, protect against injury and promote wound healing. The dressings must be constantly changed every 1-2 days. Sometimes it takes hours to change the dressing. If you do not bandage, the baby may stick to the sheet or clothing. In this case, the picture can be terrifying.
“The main specialist who cares for a patient with BE is a dermatologist. He prescribes symptomatic therapy, the main task of which is to provide proper wound care, as well as carry out prevention. For this, a lot of dressings and healing ointments are used.
photo of the fund "Butterfly Children"
If necessary (depending on the severity of the disease), other doctors are connected to the dermatologist, but this usually does not happen simultaneously. In general, a whole pool of doctors deals with BE: pediatricians, gastroenterologists, dentists, geneticists, nutritionists, ophthalmologists, oncologists, etc. For example, if we are talking about the dystrophic type, then such children are characterized by fusion of fingers and sometimes toes. In this case, the help of surgeons is required.
There is no specific therapy for BE; all main care is concentrated in skin care - the use of special creams, atraumatic dressings, bandages, special clothing, especially shoes - so that nothing is pressed or rubbed anywhere, otherwise it is always a bubble and damage. In addition, the child needs to take vitamins, for example, vitamin D, iron supplements, and special high-calorie foods,” notes the doctor.
There was a feeling of complete hopelessness
When the Foundation appeared, almost no one in Russia knew anything about the disease itself. Dermatologists had not heard anything about the disease, and medical textbooks devoted literally one and a half pages to this orphan disease. There was a complete feeling of hopelessness and vacuum.Everything had to be created from scratch. Laying a foundation that in a few years will become a solid basis for a coherent mechanism for helping children with EB, and the disease itself will be included in the list of rare ones.
And for the first time, butterfly children will come into the world and receive professional, comprehensive help. This means that they will go to school, they will look good, and their mothers will stop being afraid all the time. But before that you will have to go through a difficult, but the only true and extremely important path.
photo of the fund "Butterfly Children"
In general, if I knew what awaited me in the next year and a half, I probably wouldn’t have done it, admits Alena Kuratova.
“I don’t remember the first year and a half at all, it was some kind of incessant nightmare. I was practically never at home, constantly traveling, and at that time I still had Small child. And you also face the pain of mothers when they call and say: “My child is stuck to the sheet, I’m tearing him off, what should I do?” And you pass all this through yourself.
It was very difficult, especially when you yourself are not psychologically prepared. We have invested a lot own funds to the Foundation. If we talk about what we encountered and what we worked with, it was some kind of catastrophic hopelessness, absolute ignorance of doctors and rejection of butterfly children by society.
But when you go in the right direction, then everything helps you: people, circumstances, and space itself are on your side. A year and a half later, actress Ksenia Rappoport came to us, we started making one of charity projects, where stars were attracted to read fairy tales. Gradually, we as a Foundation grew and gained strength. We have good team, we are lucky with people. And of course, none of this would have happened without the help of caring people who support the work of the Foundation, and without the involvement of doctors.”
Everything we dreamed about comes true
Today the Foundation is implementing ten large-scale programs: hospitalization and rehabilitation of children with EB, training of doctors, patronage, targeted assistance, assistance to refuseniks, etc. More than 300 children from all over Russia are under the care of the Foundation.
If we compare it with where we started and today, the situation is radically different. Everything we dreamed about is coming true. We dreamed of a specialized medical department for butterfly children - it appeared, say representatives of the foundation.
“We initially did not want to send children for treatment abroad; our task was to organize it here, because we believe in Russian medicine and doctors. Thus, in 2015, the first and so far only department for butterfly children appeared at the National Medical Research Center for Children's Health. Here, the foundation's beneficiaries from all over Russia undergo a comprehensive examination and the necessary symptomatic treatment.
photo of the fund "Butterfly Children"
We finance everything that is not included in compulsory medical insurance, but our children do not go abroad. Now, for example, on the contrary, children from the CIS are examined in Russia. We have a rehabilitation program that takes place in two centers: one is located in the Moscow region, the other in Sochi.
And if previously it was our mother who called us after diagnosis and found the Fund herself, now most of the time it’s the doctors themselves who call us. We have a whole base of butterfly children with whom we maintain constant contact. The fund has become a kind of umbrella for families with such children,” – says Alena Kuratova.
The quality of life of children with EB has changed fundamentally. According to Foundation statistics, there used to be a high mortality rate in early age– children died before they were 10-12 years old, now this is not the case. This is because from the very birth of the child, parents are taught proper care, and doctors know how to treat such children.
Of course, with the advent of the Foundation, the quality and life expectancy of patients with EB has changed, this is especially noticeable for those who were born in the last seven years. If previously, due to doctors’ ignorance of the peculiarities of EB, children received serious injuries to the skin and mucous membranes at birth, followed by other complications, now there are practically no such children, notes Yulia Kotalevskaya.
What butterfly children look like now and what they looked like before is heaven and earth. For some of them it is difficult to say that they have this rare disease, say the Foundation’s specialists.
photo of the fund "Butterfly Children"
"And still very important point– socialization. I always wanted the butterfly child to never be ashamed of himself. For me this was fundamentally important. Previously, for example, such children stayed at home because of their condition. Nowadays there is practically no such thing. Our children jump with a parachute, play hockey, they finally started going to school instead of sitting homeschooling. The level of socialization has become completely different. And this is because we constantly repeat that epidermolysis bullosa is not contagious, it is not scary and not a death sentence,” – notes Alena Kuratova.
One of the priority areas of the Foundation’s work is the training of doctors, which is actively developing today (seminars in the regions, internships abroad).
“At first I had an unprofessional position: doctors are to blame for everything. But when I plunged into all this, I realized that it was not their fault. The disease is rare, there is very little information, most dermatologists have never encountered or will never encounter this in their entire practice. When I studied foreign experience, I realized that the impulse always began with the patient or public organization who reported their problem. Now I believe that this is the responsibility of not only doctors and the state, but also the patient. Responsibility begins when patients begin to unite and speak up. And the doctor needs to be given a tool, taught.
photo of the fund "Butterfly Children"
We translated and published a special medical literature About three thousand doctors were trained about BE. These are specialists of various profiles: dermatologists, neonatologists, dentists, gastroenterologists. Our doctors went abroad for training, and now they are training specialists from the regions. And all this really resonates in hearts and minds.
Now the Foundation is working in Kazakhstan and Uzbekistan, the situation is approximately the same everywhere. The fund has become a kind of exporter for the CIS countries. We are invited, we come and give tools to study this disease,” – says the chairman of the Foundation.
The main problem is dressings, the amounts run into hundreds of thousands
Of course, even today there are problems associated with helping butterfly children, experts admit. This and huge sums that are required for dressings, and there is not always an unambiguous position on the part of society in relation to such children.
The main problem in epidermolysis bullosa is the provision of dressings and care products. The difficulty is that official assistance is a disability pension, which, of course, does not cover the cost of dressings.
photo of the fund "Butterfly Children"
“The list that a butterfly child needs can consist of dozens of such funds. Parents buy all this at their own expense. This is a lot of money - 50-100 thousand monthly. If the patient is severe, then up to half a million rubles may be required per month. For most families, such amounts are simply unaffordable,” notes Yulia Kotalevskaya.
Thanks to the work of the Foundation, the regions became involved in this issue and took children into their care. Plans for 2021 (by ten year anniversary Fund) to ensure that all children are provided with dressings at the expense of budget funds.
“Regional authorities are accommodating and allocate money for this. Moscow has been purchasing dressings and creams for children for the sixth year now, and it is a leading region in this regard. In general, we are lucky with doctors and officials. We come and tell them: “We know how to help children, but we need funding.” And they help. I have never had the position of blaming the state; we try to communicate as partners. We come up with cases, set up a mechanism and integrate it into the state system. And this is much more effective,” says the chairman of the Foundation.
Hope for geneticists
Epidermolysis bullosa – It is an incurable disease, but scientists around the world are actively looking for ways to cure it. Since the disease is genetic, genetic scientists are developing gene therapy that would correct the mutation in the gene and stop the disease.
For example, in 2017, the first successful result in this direction was announced. A group of scientists from Italy and Germany, led by Professor Michele De Luca, developed gene therapy for a patient with borderline type EB. About 80% of transgenic skin was transplanted to the boy. Two years after the operation, doctors reported that the patient no longer had any manifestations of EB. This gives big hopes for successful results in curing BE, says a geneticist.
“Genetic engineering is one of the ways to treat EB, and it is the most radical. There is also cell therapy, where cell products are used to treat wounds. In addition, bone marrow transplantation is used. It has a significant healing effect on patients with EB. But there are some disadvantages here, among the main ones is the high mortality rate of patients,” she notes.
Now the Foundation is also actively working in the field of genetic research, developing scientific projects together with one innovative company.
Another important area for the Foundation is adult patients with EB. Now they are overboard. And while a support system has been built for children, there is nothing yet for adults.
Therefore, it is important to create a routing system so that the child, as he grows up, can continue to receive help. The foundation is now registering adults, organizing treatment and operations. There are some regions that have already taken care of such patients. There will be more cooperation with the state here, because collecting money for adults is much more difficult, fund specialists note. There is a lot of work ahead, but it is necessary and important.
Belogolovtsev Nikita Sergeevich, son famous father, did not shy away from the star name of his parent, but he himself achieved that today he is known and invited to the most interesting projects. Who is this? Let's meet my son famous person closer.
TV presenter career
Nikita Belogolovtsev is an experienced presenter, despite his young age. He began his television career at the age of 20. Then Nikita broadcast the program “Conversation without Rules” on the O2TV channel.
Just a year later it came out new TV project"Only at Night" feat. rising star ether.
Nikita Sergeevich Belogolovtsev always called sports topics his favorite area of journalism. At the beginning of his creative path he treated it exclusively as a hobby and sincerely tried not to mix it with work. However, fate does not always follow our plans and Nikita Belogolovtsev, whose biography was previously associated only with various talk shows, was graced by participation in the “Headbutt” program aired on the Rossiya-2 channel.
And a year after leaving the program, together with his star father, Belogolovtsev Nikita Sergeevich goes on the air of the program “Bely vs. Bely”, which was also of a sports nature. In the same year, the young man became co-host of the “Sports” section on the “Rain” channel. Optimistic Channel".
Of course, it was not without criticism. Where would we be without this in the media business? Nikita Sergeevich Belogolovtsev was accused of preparing custom programs and conducting them with obvious distortion of facts. The greatest storm of negativity hit the program dedicated to the assassination of the President of the United States of America Kennedy, aired on the Dozhd TV channel. Surprisingly, criticism fell specifically on the presenter, despite the fact that the main emphasis in the program was on official version crime and further investigation.
What happened before?
Nikita Sergeevich Belogolovtsev was born into a family famous artist and TV presenter After graduating from school, he entered MGIMO. After graduating from the Faculty of International Journalism, he followed in his father’s footsteps.
In addition to Nikita, the family raised two more sons. As in the fairy tale about three brothers, the children were raised to be very friendly.
Family Challenge
The Belogolovtsev family is truly amazing. It’s not just acting talent and parents’ connections that lead to success. Unity, mutual support, raising children in a spirit of respect. All this created a reliable springboard for achieving our goals.
The twin brothers were born at seven months old. Long months of rehabilitation helped the children get out, however younger brother Nikita, Evgeniy was diagnosed with cerebral palsy. Who knows, maybe it was this test that brought the family together. There is no doubt that it was her support that helped Evgeniy also conquer the television studio. The RazTV channel invited him to host one of the columns in the “DIFFERENT NEWS” program.
The entire Belogolovtsev family actively promotes healthy image life and instills a love for sports. They actively promote the “Dream Skis” rehabilitation program for children with cerebral palsy, Down syndrome and autism. Parents believe that through ski lessons with competent coaches and specialized equipment, children make significant improvements.
Personal life of Nikita Belogolovtsev
Nikita Sergeevich Belogolovtsev married his classmate. Also in student years young people spent a lot of time together, especially in the institute team of the Cheerful and Resourceful Club (KVN).
Lyudmila Ivanova and Nikita Belogolovtsev, whose family began its history immediately after graduating from MGIMO in 2010, are already experienced parents today. One year later life together, the young people had a daughter, who received the name Eva.
Four more years later, in 2015, Lyudmila gave her husband another 3890 grams of happiness. This time a son, an heir, named Timothy by the couple.
Daughter Eva is now engaged in choreography and attends various master classes. In all her endeavors she feels the presence and support of her parents.
Awards
TV presenter Nikita Sergeevich Belogolovtsev became a nominee for the All-Russian National television award TEFI in the category "Best Sports Journalist" in 2012.
In social networks
What celebrity doesn't have a page today? in social networks? Belogolovtsev Nikita Sergeevich is no exception. It is quite widely represented on the Internet, its official pages are on Vkontakte, Facebook, Twitter and even Instagram. Information about the TV presenter can be found in all kinds of ratings.
Not just television
TV presenter Nikita Sergeevich Belogolovtsev is not fixated on only one area of self-realization.
In addition to his media career, he also realizes himself as a sports producer.
Also at one time, Nikita Belogolovtsev headed the editorial board of the educational resource “Mel”. According to the management, their main target audience is the parents of students, and not the schoolchildren and future students themselves.
At the beginning of the journey to editorial board The resource had only six employees. The main investor and financial partner of Mel is the head of Nova Capital, one of the directors of Delovaya Rossiya, Alexander Rudik. Nikita Sergeevich believes that the main profit of the team will be realized not so much from the sale of the publication itself, but from the related services that they will offer.
Belogolovtsev also tried himself in the journalistic field as the author of articles for the publications “Around the World” and “Geo”. He was a broadcast presenter at the Mayak radio station.
Hobbies in free time
Belogolovtsev's eldest son includes traveling among his hobbies. He considers Italy and all its provinces to be his favorite region. Loves traveling around Europe and around the world. Most often he relaxes with his family by the sea.
Values time spent with children. Joint participation in “Fun Starts”, culinary master classes, DIY crafts. All this, undoubtedly, brings parents and children closer together, which is what Nikita Sergeevich does. Today you can find many photographs of Nikita posing with her daughter.
His undoubted advantage as a father is that he instills in his daughter his love of sports. Previously, he himself also actively played football, but after an injury he replaced his favorite form of leisure with basketball, which he had also valued since childhood.
Today Belogolovtsev Nikita is not only the bearer of a star name, but also a full member of the world of showbiz. Today his presence is in demand on many projects. Therefore, Belogolovtsev can justifiably be called a stellar personality.
The son of the popular artist Sergei Belogolovtsev, Evgeniy, has cerebral palsy. However, despite serious illness, Zhenya got a job: he became the host of a television show.
ON THIS TOPIC
Sergei Belogolovtsev himself shared the good news. He said that his youngest son Evgeniy, who is already 25 years old, recorded pilot episodes as the presenter of a section in a program for one of television channels. Moreover, Evgeny received a fee for the first time in his life.
“A week ago, my parents informed me that I could become a TV presenter. We dream that I would work in my specialty - after all, after graduation theater institute I'm probably the first professional actor diagnosed with cerebral palsy. I want guys like me to believe in themselves!" Starhit quotes Evgeniy Belogolovtsev.
According to the artist’s son, at first he was confused, but then decided to agree. For several days, Belogolovtsev Jr. rehearsed and learned the text. “Then my father went and bought me a suit for filming, I should look like Larry King: a bow tie and pants with suspenders. Dad spent the whole day running around Moscow for these suspenders.", said Evgeny Belogolovtsev.
The pilot shooting was successful. The artist’s son said: “I came to the studio with my mother, but I asked her to leave, it’s easier for me. First I watched how my colleagues were recording, and then I went myself. Even though I had learned the text by heart, they turned on the teleprompter for me and it became completely easy! The fee for filming was a surprise for me. Let’s celebrate with friends, I’ll also buy flowers for psychologist Natalya Alexandrovna, without her nothing would have happened.”
Let us remind you that Evgeniy Belogolovtsev is youngest son Sergei Belogolovtsev. The popular artist, OSP-Studio actor, has two more sons: Nikita and Alexander. Moreover, Sergei is already a grandfather. Nikita's eldest son has a daughter, Eva. Let us note that very soon, in early April, Sergei Belogolovtsev will turn 50 years old.
