Before the blog, everyone is equal

Beauty blogger Lily Luo Hundreds of thousands of subscribers and Albright syndrome. Her story in the report of Anna Sakharov

The main trend of YouTube in recent years is beauty blogging. The canonical beauties shoot videos and tell millions of girls how to achieve an “ideal”. With shades of tonal cream, primer, blush, bronze and highlighter, turn round cheeks into aristocratic cheekbones and give tired skin a “radiant” look. To draw eyebrows with a pencil, emphasize with a concealer and fix with wax to make it clear thick and drawn.

“Apply a corrector, mascara, eyeliner and shadows of three shades to make my eyes large and expressive,” I hypnotically drive a brush in the face, following the instructions of the nymph from the laptop screen. I am looking for new perfection instructors. A shining, cartoon-small, asymmetric face named Lily Llya smiles in the window of recommendations.

The hallway of a two -room apartment where Lily lives with her mother photo: Lesya Polyakova for TD

“I am a person with disabilities, but this does not mean that I can’t do my favorite thing, I can’t paint and shoot videos! [...] I say this, so that you just understand that I am the same as you, I just have not so much opportunities as desire ... I hope you accept me, I will like me, support and will not be too strict :)). Thank you!" (The author’s spelling is preserved. - TD ), ”the girl warns in the description of her channel.

In February 2016, her blog was two years old. Since then, the girl’s videos watched 6,470,000 times

Lily writes lessons in the apartment in Naberezhnye Chelny: how to apply red lipstick, make a seasonal makeup, make up like Miley Cyrus, Angelina Jolie or Nicky Minaj. He answers the questions of subscribers about friendship, love and betrayal, and at the end of each release winks or sends air kisses to 100 thousand subscribers. In February 2016, her blog was two years old. Since then, the girl’s videos watched 6,470,000 times .

Lily has an older brother (and already two nephews), with whom they have a very warm relationship photo: Lesya Polyakova for TD

On the main page of the channel, the video "What is wrong with me?" In it, the girl tells the audience about herself and her illness: Olbright syndrome.

Lily was born a healthy child, but at seven she began to limp on his left leg. Doctors sent her to Kazan, and already there the girl was diagnosed with Olbright-Mak-Kun, or complete fibrous dysplasia. Fibrous dysplasia affects the bone system: the development of the skeleton is disturbed, the connective tissue replaces the strong material of the bones. Cysts appear inside, bones are deformed under the weight of the body, lameness, curvature of the spine appears. Sometimes the disease affects the bones of the skull and jaws: in such cases, the face grows unevenly, asymmetry and non -standard eye arrangement occurs.

There are usually two places for walking: the territory of the BSMP, this is very close to the house, and this small park is a little further than the photo: Lesya Polyakova for TD

This disease develops in childhood. The reason is an innate mutation in genes. And Olbright syndrome also suffer mainly by girls. Science does not know how to treat it, most often doctors simply observe patients until adulthood - by this time the bones become stronger. In seventeen cases out of twenty, the disease affects one bone, in two - several neighboring ones, in one - the entire bone system . Lily is the only one of twenty.

In seventeen cases out of twenty, the disease affects one bone, in two - several neighboring ones, in one - the entire bone system

Neither the operation on the leg, nor the Ilizarov apparatus improved the situation, and the fragility of the bones was added to lameness: falling, Lily broke the leg or arm each time. The left leg was operated on four more times, but as a result it became even worse: she shortened, stopped moving and bending.

In the third grade from the usual class, where Lily had many friends, I had to go to the correctional: “I did not know anyone there and did not friends with anyone. I went there with tears in my eyes. I went into the classroom, sat at the desk, began to roar, because I did not like it there. Relations, you know, were such: “Hello-hunger”, “So far”. There was no such thing that we went to visit each other, did the lessons together. ”

Pandus appeared in the entrance only a few years ago, not without media in the media photo: Lesya Polyakova for TD

Then it hurt to walk: the teacher brought food from the dining room to the class from the first to the third floor. After the seventh grade, Lily was transferred to home schooling. Teachers were supposed to come once a week, but in reality only the former school principal and a teacher of Tatar did this. The rest came two or three times a year. The family complained to the director, but it turned out that she herself ordered to walk once a month “for a checkmark”.

In the 10th and 11th grades with Lily, the class teacher sometimes was engaged in. Once she asked:

- Well, Lily, how will you take the exam?

-Somehow we will hand over, prepare.

The teacher replied that Lily could not hand over the exam and would not go anywhere: “I began to sob directly in front of her. As a result, she left. "

I knew that there would be questions: "What do you have with your face?" And "Why do you look like everyone else?" I just spit and decided to shoot video

The exam in Russian and mathematics Lilya handed over at home with teachers from another school and entered the law faculty. Now teachers send tasks, and she performs them remotely. However, Lily does not want to be a lawyer: “I don’t know if I will work in my specialty. This is not mine, I don't like it. A few years later I would like to be a popular video blogger. It would be great to have a million subscribers. ”

Lilya often takes off in the bedroom - the light from the large window and the dressing room with all the cosmetics is very close to the shooting site photo: Lesya Polyakova for TD

Now Lily is 20 years old. She decided to create the channel because she missed four walls and wanted to find a hobby: “I watched a lot of beauty and just a video. I decided why I don’t try, since I have a camera. I'm not a supervisor, but I really like it. I knew that there would be questions: “What about your face?” And "Why do you look like everyone else?" I just spit and decided to shoot the video . ”

The blog gained fame due to chance. Someone flooded Lilino video into one of the popular publics in VKontakte, adding an insulting comment. Users began to go to her channel, the video began to gain thousands of views, someone signed-in a word, a chain reaction went: “I can only say thanks to the one who insulted me and published the video. I never expected that I would have so many subscribers. I was upset when no one watched me, I did not subscribe. I thought: “That's it, I will retire tomorrow and I won’t shoot.” Thanks to YouTube, I met many people, with other bloggers. They support me, and this is very pleasant. Since I am at home all the time in four walls, there is no communication, and so there are a lot of it. ”

The first issues were recorded by the tablet camera. Now Lily has a mirror camera, she thinks about buying a good tripod and video light, so as not to depend on weather conditions and the time of day photo: Lesya Polyakova for TD

Lily puts money earned with the blog to go to Moscow to the Videopeople festival and see your favorite bloggers. She also dreams of flying on vacation to Turkey or Thailand. A few months ago, Lilya said in one of the videos that her cherished dream is an electric car. The city hall promised to help and disappeared.

“I want to go out on my own, walk. It’s very difficult for me, I have weak hands, and I can only move at home. I only go out with my mother. I can’t buy either - it is worth like a whole car, ”Lily said in the video. Then several subscribers advised Lily to open an account: for a month, 44 thousand rubles were transferred to him. Now she herself travels along the street, but she can’t go out alone - in the house there are steep ramps, it is scary to go down on them.

In the mail and on the social network, subscribers send the drawn portraits of Lily, and in the comments to the video they call it the most spiritual blogger. Other people with developmental features are also divided there .

Lilin's childhood friend Dima. Now he is graduating from grade 11, preparing for admission to the Eastfaces in the Elabuzh Pedagogical Institute KFU photo: Lesya Polyakova for TD

“One girl wrote to me, she is also disabled. She said that she was shy about going out. That they poke their fingers and look at her. She had no legs, I understood. She said that when she looked at my video blog, she began to go out and stopped being shy. ”

In the video under the names “Self -Self -Self -Confidence, or Motivation to become better”, “Motivation: how to believe in yourself and your strength” Lily gives subscribers advice and shares his experience:

“If you have any complexes, imagine that they simply are not there. And most importantly - turn them into dignity. For example, I am a girl with disabilities - one such on Russian YouTube. ”

The number of cosmetics on the lillin table would be envied by many girls photo: Lesya Polyakova for TD

“The main thing, do not pay attention to people who say that nothing will work out. These are those people who did not succeed. Remember, you are beautiful and do not listen to anyone. ”

“When I was a teenager, it was the hardest time. I began to consider myself a freak. I did not love myself, I did not like my face. I tried not to take pictures once again, not to look in the mirror. I watched and was upset. This period just needs to survive. ”

“Lord, when people understand that appearance is not the main thing. It's like candy. The wrapper is so beautiful, and so I want to eat it. You open the candy, bite off, and she is disgusting! ”