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“There are a lot of wounds on the body in the summer.” Nadia has butterfly syndrome

“There are a lot of wounds on the body in the summer.” Nadia has butterfly syndrome

6 minutes read
This text is about: 26-year-old SMM-manager Nadiya Vozna talks about living with a rare genetic disease - bullous epidermolysis or butterfly syndrome.
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[ This rare disease develops due to a defect in a gene that causes a lack of structural protein in one of the layers of the skin or mucous membranes. The skin of people with this disease is so fragile that a large wound can appear from even the slightest damage] 

I was born with bullous epidermolysis. My younger sister also suffers from this disease.

My skin, groin, ears, mucous membranes of the mouth and genitals suffer the most. Periods of exacerbation of the disease are observed in summer, when the heat is unbearable. The body does not respond well to high temperatures, and many blisters appear on it, which later turn into wounds that do not heal for a long time.

When there are many wounds on the body, they cause general fatigue, it is difficult to get out of bed and do something. It is difficult to take a shower because the wounds are burning.

My disease is not a purely dermatological problem. Other organs and systems also suffer from it. For example, I have poor eyesight and hearing problems.

Unfortunately, scientists have not yet found a perfect way to make changes to genes, and otherwise this disease is not treated. Somehow it can be earned only by proper skin care. Bandages, ointments, creams, vitamins that support the state of the body … All this is expensive, some are not sold in Ukraine. For example, my sister and I buy bandages in Germany at our own expense – one bandage costs about 1300-1400 UAN. Bandages need to be changed daily.

Another problem for people with butterfly syndrome is the lack of qualified doctors. For example, there is a good specialist in Kyiv, but it is very difficult to get to him for an appointment. Therefore, I would very much like to see a specialized center in our country that helps in the treatment and rehabilitation of bullous epidermolysis.

People do not think that their questions hurt

While in school, I suffered from bullying by both my classmates and teachers. The children teased, laughed, and took away my things. Once I was even beaten. Many parents forbade their children to communicate with me. Even my friends were afraid to take my hand, because there were wounds and blisters on it. It was a very difficult period in my life, I was closed in myself, I was even afraid to go to school.

There were also problems in relationships with guys – many of them were scared of my illness. All because people for some reason think that bullous epidermolysis is contagious and can be transmitted through touch or sexual contact. In fact, this is not true.

I still come across people’s uneducated attitude towards myself. There were wounds on my arms and neck (especially in the summer): I used to ride the subway and hold on to handrails, and passengers accused me of wanting to infect others. People are not ashamed to ask me completely tactless questions, without even thinking that it could hurt me. I have already learned not to react to such behavior of people, but sometimes I still can’t help but cry. At such moments, I am disappointed in people.

Despite everything, I accept myself as I am. To feel inner confidence, I went to a casting reality show for models. Successfully passed the first and second rounds. I was not selected for the final, but I was not upset at all, because I realized how far I had gone!

Today I work in the field of SMM, organize shootings, communicate with people, interact with clients – I just get incredible pleasure from it. In my free time I like to read literature on psychology, do yoga. But my biggest hobby is macrame: I knit clothes and handbags.

Finally, I want to say: do not be afraid of me. I am the same person as you. The only difference between you and me is that there are scars on my body that affect my psychological state and self-esteem, I need careful treatment and I feel severe pain during bandaging. But this is my test, which I accept with my head held high. In everything else I am an ordinary person.

book: “The Miracle Morning: The Not-So-Obvious Secret Guaranteed to Transform Your Life (Before 8AM)” by Hal Elrod
movie: “Wonder” directed by Stephen Chbosky
place to visit: Nonni Bertoni in Kharkiv
dish: lasagne

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