What's With Your Hands?: I Live With Epidermolysis Bullosa

A life 2023

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What's With Your Hands?: I Live With Epidermolysis Bullosa
What's With Your Hands?: I Live With Epidermolysis Bullosa
Video: What's With Your Hands?: I Live With Epidermolysis Bullosa
Video: Living in a Body of Open Wounds with Less than Half His Skin (Epidermolysis Bullosa) 2023, February

Epidermolysis bullosa is a rare genetic disease in which the outer layer of the skin does not "hold" to the deeper layers. Because of this, the epidermis becomes very fragile - with any mechanical injury, wounds and blisters form on the skin. Some people with epidermolysis bullosa are called "butterflies" because of their fragility. Our heroine Olga talks about life with this feature, about pity, beauty and dreams.


Yulia Dudkina


I knew from childhood that my skin is very fragile. It is enough to lightly hit something or touch an object with a rough surface - and open wounds appear. Hands and knees are especially affected. I have to wear only soft fabrics: if I wear tight jeans, the skin can instantly rub off into the blood.

If you look at my face, you may not notice that I have some peculiarities. Sometimes small spots may appear on my skin. But in general, the face is a part of the body that rarely comes into contact with hard surfaces or hits something, it is not so easy to injure it. First of all, my hands give me away - most people with my diagnosis have deformed fingers, and there are blisters and scars on the skin. Often in public transport, strangers ask me: "What's with your hands?" I pretend not to hear the question - why explain to everyone I meet that I have a rare genetic disease?

It happens that in a minibus I try to transfer money for a trip, but the passenger in front, seeing my fingers, pulls away his hand. Then I just give the money to another person: if someone does not want to see my skin so much, the light has not converged like a wedge on this person, I can cope without him. As a rule, I am not very worried about such incidents. They say I am a very calm person. And it seems to me that I just got used to living with my own peculiarity - it’s from birth, I don’t know how it could be otherwise. I think if the genetic disease manifested itself at a conscious age, it would be more difficult for me to accept it. And for me, my fragile skin from childhood was a given.

I grew up in the 80s in a very small city a few hours away from Moscow. Local doctors knew little about epidermolysis bullosa - they could not provide any special treatment or detailed consultations. It was only known that my skin is very easily injured and the damaged areas need to be bandaged. My parents did not treat me as sick or special. I had a tricycle, and I kept falling off it. Other children, having fallen off the bike, got off with bruises, and I had huge patches of skin torn off, and they healed for a long time. Parents did not swear, did not blame me: they calmly made bandages in the right places. They couldn't put a spacesuit on me and lock me up at home.

And yet there were restrictions. When a lot of people rode on the hill, I was not allowed there. They did not take with them to the forest for mushrooms or on trips to another city. I dreamed of doing equestrian sports, but my skin could not stand that. I was offended by my parents: why everyone can, but I can't. In general, I accepted my state calmly, but still dreamed of one day becoming “ordinary”. As a child, for some reason it seemed that this would definitely happen one day. With such a feeling, the child dreams of a toy - he knows that his parents will give it to him for the New Year, you just need to wait. This feeling was gone already in adulthood: the older I got, the clearer I understood that the dream would remain a dream.

Over time, I began to use this: as soon as I realized that a young man was not interesting to me, we were not on the way with him, or he was annoying me with something, I said

about your diagnosis

Surprisingly, as a teenager, I did not have complexes because of my skin. Many people with the same diagnosis constantly try to hide their hands in their pockets or behind their backs.But I didn't even think about it - on the contrary, I could actively gesticulate, completely forgetting that my fingers do not look like most people. I had many friends in the yard, and they did not pay attention to my peculiarities and did not ask what was wrong with me.

When many girls developed acne, they began to have complexes and suffer, and I was genuinely perplexed, even chuckled a little. I understood that their skin problems would most likely go away in a few years, and I would always live with mine. If in adolescence I had complexes, it was more because of my figure: I was always very thin and fragile and for a long time looked less mature than my peers.

For the first time, difficulties with acceptance of appearance appeared after twenty years. Then I wanted a romantic relationship, I began to go to dances with my girlfriends. For some reason no one invited me. At first I couldn't even think that it was because of the skin. I thought, "Today is just not my evening." She reminded herself that "statistically there are nine guys for ten girls." But one day, when I once again noticed that young people did not pay attention to me, a girl I knew said: "Look at yourself more closely." Later, I heard similar statements a couple of times, including from young people.

When I was told this, I tried not to take it too seriously and not take it personally. But all the same, these words were deposited in my head. I began to realize that my hands are “ugly”. There is a stereotype that a woman's hands should be smooth and well-groomed, and it turned out that I do not fit into this rule. Gradually, I began to try to wear long-sleeved sweaters, more often to hide my hands. I began to worry that I was not allowed to wear rings and bracelets: it is believed that all girls love jewelry and the best gift for any woman is a ring with a beautiful stone.

When I realized that many do not want to get to know me because of the peculiarities of my skin, I began to surf the Internet more - now I often met young people in ICQ. I noticed: often, even if the conversation is going well, it is worth telling the person that you have a rare skin disease, it disappears very quickly. Politely ends the conversation, and the next day removes you from the contact list and stops answering. Over time, I began to use this: as soon as I realized that the young man was not interesting to me, we were not on the way with him, or he was annoying me with something, I spoke about my diagnosis. The man was blown away by the wind.


I didn't have the disappointment that people disappear like that. I have known for a long time: those who are really interested in me, who like me as a friend or as a girl, do not attach importance to my characteristics. Of course, if a person managed to really like me, but disappeared because of my diagnosis, this could upset or offend me. But in the end, why do I need a person for whom the characteristics of my skin are so important?

Strangers often try to give me advice. For example, I regularly hear: "Try celandine." Once a friend introduced me to his girlfriend - she was a very neat, well-groomed girl, it was evident that she pays a lot of attention to her appearance. She didn’t say anything to me, just looked around. A friend then said: "You know, my friend recommends to go to the beautician." For some reason, it does not occur to people that if there was an affordable way to cure a rare genetic disease, I would have done it already.

Once on the bus, a drunk man was examining me very closely and then said: “I see you have a fourth-degree burn. I am a plastic surgeon, come to our clinic, we will help you. " I tried to convince him, to explain that I did not have a burn at all. But he argued with me, and in the end I agreed with him, just not to continue this meaningless conversation.

What I really don't like is when people feel sorry for me. They call me “poor thing”, they ask how I “live like this”.Elderly people especially often behave this way. I'm not a poor thing at all and I don't like to be treated like some kind of sick person. I don’t treat myself that way either. You need to take care of yourself: make dressings, buy medicines and dressings. But caring is not to be confused with pity. When you feel sorry for yourself, everything immediately starts to hurt, you don't want to do anything. I don’t want to think all my life only about my health and about the fact that I have features. I work as a graphic designer, make posters and brochures for our cultural center, and take freelance jobs. I also do painting, painting on wood.

Over the years, it becomes more difficult, complications appear. Indeed, with my diagnosis, not only the skin is injured, but also the mucous membrane. There are problems with internal organs. It can be scary, but I don't panic or get depressed. I have a stable psyche, if crises happen, then I get out of them pretty quickly.

Sometimes I can get hurt and not notice it: in the most vulnerable places, the skin was injured so many times that it managed to heal and deform, so the sensitivity has decreased

Many people seem to stick a label on me: it doesn't matter to them what I do, what interests me. For them, I am a girl with skin peculiarities. In our small town, some people I don't remember constantly greet me. I ask: "Have we met with you?" They remind me: once we crossed paths and talked for three minutes. Usually people do not remember every chance they meet. I understand well why people remember me so easily and recognize me everywhere. It hurts.

The situation is similar with doctors. If I come to them with some problem that has nothing to do with my skin, they do not want to take on it. They say: "What do you want, you have such a disease …" For example, I have a problem with my eye. He hurts and does not see very well, in childhood I was even suspected of the initial stage of cataracts. I come to the ophthalmological clinic, the doctor conducts an examination, and then begins: "You know, in your case …" And I understand: once again they won't help me. As if if I have an incurable disease, I need to give up everything else that happens to my body. Likewise, he says to older people: "What do you want at your age?" As if after sixty you don't need to be treated - just go to bed and die.

But in general, apart from the stupid advice from strangers, I would not say that my condition seriously interferes with my life - I work, I communicate with people. Yes, I cannot wash the dishes with my hands, the detergent will immediately corrode my skin. I have to use a long-handled brush. Sometimes I can get hurt and not notice it: in the most vulnerable places, the skin has been injured so many times that it has healed and deformed, so that the sensitivity has decreased. Sometimes I see a wound and do not understand where it came from. But all this is familiar - I remain calm and go to bandage.

Since childhood, no one has imposed standards of beauty on me. I knew that all people are different and each has its own characteristics. I never considered myself beautiful, but also ugly too - I think I am ordinary. In photographs, I usually try to hide my hands - but this is probably not due to complexes. I just don't want strangers to discuss my photos on social networks later, write nasty things. Why read unpleasant things about yourself if you can avoid it?

PHOTOS: srckomkrit - stock.adobe.com


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