Butterfly-girl. 3

"Who could tell me where the pain finishes? Who will help me to get rid of this painful slavery? What can be done to stop these crazy never-ending pains of dressings?! From the disease there is no escape, you cannot hide, tears and requests for mercy can’t help, this disease cannot be defeated! But I'm trying very hard! Every day I fight for every breath, every millimeter of skin."

These are the words of Alena Trofimenko, a "butterfly girl" who lives in Krivoy Rog. Have you ever heard about such "butterfly" people? These patients have a rare disease: bullous epidermolysis. In their body, there are no enough proteins that bind the layers of the epidermis. As the result - even a light touch literally rips the skin, provoking the formation of bubbles.
Could you imagine a newborn, who has wounds from swaddling, from friction about the seam on the clothes. Could you imagine a child who cannot walk, so as not to overheat and do not overcool, he cannot brush his teeth, play ball, eat solid food - all the mucous membranes of the body are just as vulnerable as the skin surface!

And despite all precautions, skin damage cannot be avoided. Under the clothes, they have never healing wounds.
Alena is 28 years old. It seems that during this time one can get used to pain, inferior sleep, constant night dressings (they last from 12 am to 7 am). But this is not the kind of a pain to which you can get used to. Now, after a hot summer, Alena has an exacerbation of the disease. 80% of her body is affected, her entire back is a single wound, on one blade a bone almost shines... She has lost 7 kg, and it will be difficult to gain weight: because a food is also a problem.

Olena cannot anymore use domestic ointments and dressings, even high-quality and expensive - now they cause burning and itching, causing an allergy Absolutely everything for dressings needs to be bought in Germany, Italy, France. For drugs and consumables, Olena has a whole cupboard at home. Could you imagine how much it costs: tens of thousands of hryvnias per month. So, life with bullous epidermolysis is not only pain but also fear. Fear that the money could run out.

Olena escapes from illness to her favorite hobby - embroidering icons and rushnik (Ukrainian ritual cloth). She embroiders professionally, the faces of saints come to life on her icons. It is not only passion but also a small income. But she can embroider only when the disease recedes slightly, the rest of the time is not up to that.

100 000 UAH are costs of consumables and medicines for a month. A month of life without fear, that we can win for Alena. Each your 20 UAH is a weapon against a disease. Let's show Alena that she is not alone!

Name: Trofimenko Olena, 17.11.1988

City: Kryvyi Rig

Diagnosis: bullous epidermolysis, dystrophic form, generalized type, with concomitant diseases of the whole organism