A Second Skin for Masha

Masha has an ordinary childhood. She runs around with her friends, jumps on the trampoline, and plays with her cat. The only difference is that every day, she has to have her wounds treated and her entire body re-bandaged. Masha's skin is extremely fragile - like the wings of a butterfly. To live a full life, every wound must be covered each day with special dressings. A few years ago, supplies of these bandages to Belarus came to a halt, and Masha's life could have changed dramatically. Recently the Ministry of Health with UNICEF's support was able to provide children with epidermolysis bullosa (EB) with the life-saving bandages they need. Thanks to this, Masha and other children can continue living ordinary lives: playing, learning, and making plans for the future. 

My skin is fragile, I'm like a butterfly”: about life...

We sit beneath a pine tree, talking about life. Masha tells me that there’s a little girl living in a nearby house — “she’s still really little, but her cheeks are like this — like tomatoes!” And over there is the house of one of her friends. If we want, she’ll introduce us.

"Do your friends know why you're wearing bandages?" 

"Yes. They ask me, 'Why are you wearing bandages?' 'Why?' 'Why?' 'Why can't you do that?' 'Why?' 'Why?'" 

"And what do you tell them?" 

"I tell them I have epidermolysis bullosa. My skin is fragile; I'm like a butterfly. Come on, I want to show you something!"

And off we go to smell the flowers. 

Masha is seven. She’ll spend the whole summer with her family in the countryside, where we’ve come to visit her. Then she’ll return to the city, where her days will be filled with a very different kind of routine. But whether she’s in the city or in the countryside, one part of every day is non-negotiable: dressing changes.

The first blisters appeared on Masha’s skin a week after she was born. At first, the doctor suspected an infection. They treated the wounds and changed her dressings, but new wounds kept appearing. Two months later, they went to the hospital, where Masha was diagnosed with epidermolysis bullosa. It is a rare genetic condition in which the skin and mucous membranes become extremely fragile, like butterfly wings, and can be damaged even by minor mechanical contact. Statistically, one in every 50,000 to 70,000 people is born with the condition. Today, more than 180 people in Belarus are living with epidermolysis bullosa, including 145 children (according to the Belarusian Association for Supporting People with Epidermolysis Bullosa).

"At first, we thought we'd treat the wounds, they'd heal, and everything would be fine. But when we received the diagnosis, I realised this was something we'd be living with for the rest of our lives," says Masha's mother, Yevgeniya. 

Yevgeniya remembers that it took her about a minute to process and accept the diagnosis. Since then, there has been only one moment when it truly overwhelmed her.

"Masha was about two years old. We were staying at my mother's summer house, and there was a beach nearby. I watched another mum take off her little girl's shoes, and she ran barefoot across the sand and pebbles. I realised then that my Masha would never be able to run like that. But it's okay. It's not a tragedy. We just have to keep living and do everything we can to make life easier for her." 

And life went on. Masha played in the sandbox, went down the slide, ran around with her friends, chased the cat and roughhoused with her older brother, Ilya. Shortly before she turned three, she started kindergarten. An outgoing child, she fitted into the group almost immediately: by the very next day, she was staying for the whole day. 

"We try, whenever possible, not to forbid or restrict anything. She'll have plenty of limitations throughout her life, so we want to make sure she's as comfortable as possible right now." 

Of course, none of this comes easily. An ordinary life is possible only under certain conditions: Masha needs the right care and specialised wound-care products. Dressing changes alone take 40 minutes to an hour every day. Sometimes her wounds hurt, and then Masha takes painkillers. She sometimes has to miss kindergarten: the wounds may be painful, there may be too many of them, or her dressings may need changing every hour. And her mother is always ready to come and take her home if a new wound appears while Masha is playing and the kindergarten staff cannot treat it. 

But the whole family chooses to focus not on the illness, but on life. All of this is simply part of her life — nothing more.

Living with EB 

"I like all of them just the way they are — as long as they don't bother me," Masha says, pointing to her bandages. "Right now, they don't bother me." 

Masha has a moderate form of epidermolysis bullosa. Her wounds can appear for all sorts of reasons: brushing her hand against the carpet at kindergarten, falling over, or simply catching her skin on something. 

"When she was about one and a half or two years old, we went through what I call our 'asphalt phase.' She was always running and constantly falling. Her palms, knees, feet, lower back, tummy - everything was affected. Back then, changing her dressings took two and a half hours. I honestly thought it would never end."

Dressing changes don’t take quite as long now, but every wound is different and requires different care. Each one has to be treated with a separate ointment and covered with four layers of dressings. The top two are bandages: a regular one and a tubular one. The bottom two layers are the most important. Their quality determines how well a wound heals and how comfortable it is to live with. According to Yevgeniya, the Swedish bandages were best suited for children with EB, with no equivalent products available to them. 

"Imagine if you told me, 'I'm taking these dressings away.' I honestly can't imagine what I'd use instead. I know exactly what would happen — I wouldn't have anything to put on my child's wounds. They're like a second skin. I simply don't know how people with this condition can live without them." 

Yevgeniya holds up one of the dressings. She points to its highly absorbent layer, which effectively absorbs wound exudate. This helps wounds heal faster and reduces the risk of infection. The silicone layer on top acts as a protective barrier, preserving the delicate new skin that is just beginning to form over the wound. It also functions like skin itself — protecting against knocks and helping prevent new wounds from developing. The dressing is flexible enough to be applied to knees, elbows and other joints. At Masha's age, she needs 40-50 of these dressings every month. As she grows, that number will increase: the larger the surface area of her skin, the greater the area that can be affected. 

"It was a catastrophe. We needed them as much as air" 

"You love nature, don't you?" 

"Of course! Dad and I went fishing yesterday! I saw little baby swans - they were still grey! They were sooooo cute! I even cried!"

Masha's parents have worked incredibly hard to make sure her tears are tears of joy rather than pain or discomfort. During the first three years of her life, the family received the bandages she needed through a subsidised prescription programme. A few years ago, import of these dressings to Belarus stopped.

"They simply disappeared. There was nowhere to get them. What were we supposed to do? It was a catastrophe. We needed them as much as air. When you don't have them, you can't sleep. You simply can't sleep," Yevgeniya recalls.

Simply covering wounds with bandages or using other dressings and gauze is a very poor alternative. They make it difficult to move comfortably and do not protect the skin from new wounds or infection. Determined to preserve Masha's quality of life, Yevgeniya and her husband immediately began searching the world for Mepilex dressings. 

"Whenever someone was travelling abroad, we'd ask them to buy some for us. Twenty dressings, forty - whatever they could find." 

If someone couldn’t arrange delivery from abroad, people would wash the dressings and use them several times. And the alternatives came with plenty of problems of their own. Some hardly absorbed anything. Others slipped out of place or were too thick and made it difficult to move. 

“Another kind was brought to us. I put one against my lip to see how it worked, and it stuck so tightly I could barely peel it off. We couldn’t use those either: with something like that, it would just take a piece of Masha’s skin off. The imported dressings were completely different.  And the other parents feel the same way.”

Yevgeniya knows what other parents are going through firsthand. After Masha was born, she joined a Viber group where adults living with epidermolysis bullosa and parents of children with the condition had come together. Soon afterwards, the parents established the Belarusian Association for Supporting People with EB. Yevgeniya is one of its activists and recently became its chairperson. 

“When you act on behalf of an organisation, it’s easier to get things done. You’re not coming as a private individual, and you’re not speaking only about your own needs and problems. Behind you are another 57 people from all over the country. That gives your words a completely different weight.” 

But the organisation was unable to solve the problem with the dressings. They reached out to the media and various foundations for help. They started knocking on every door they could find. They wrote to the producer of the bandages and to DEBRA, the international organisation for people with epidermolysis bullosa with no progress.

With the support of the Ministry of Health, they turned to UNICEF. The problem did not go unnoticed, and a solution was found to procure and deliver the dressings. 

“This was the result of a joint effort on all sides. The Ministry of Health did its part, we did ours as a civil society organisation, and UNICEF worked with suppliers and diplomatic missions on its side. This cooperation produced a truly major, truly important result. We managed to bring the dressings into the country, and people received them,” says Sviatlana Ramanchik, a member of the Board of the Belarusian Association for Supporting People with Epidermolysis Bullosa. At the time, she was the association’s chairperson and was working to resolve the issue. 

"The most important thing is to support your child"

We start talking with Masha about the future.

"I'm going to play the trumpet," she announces.   

Not long ago, she passed her entrance exams and was accepted into music school. This autumn, Masha will also start first grade. 

Her father is already picturing Masha’s graduation. He says that if she wants to wear high heels, she’ll wear high heels. Even if they cause new wounds afterwards, those can be covered now that there is no longer a shortage of dressings. What matters most is that his daughter follows her dreams and does what she wants to do.

“Children with EB socialise very well. They go to kindergarten and school, graduate from university, get jobs, have children and build families of their own. I know people like that — there are plenty of them in our community. With the right care, their quality of life can be maintained, and children can grow, develop, fulfil their potential and make a contribution to the lives of others.”