{"id":3328,"date":"2026-03-19T11:21:23","date_gmt":"2026-03-19T11:21:23","guid":{"rendered":"https:\/\/kristianhulala.sk\/about-me\/"},"modified":"2026-03-28T15:06:56","modified_gmt":"2026-03-28T15:06:56","slug":"about-me","status":"publish","type":"page","link":"https:\/\/kristianhulala.sk\/en\/about-me\/","title":{"rendered":"About Me"},"content":{"rendered":"

My life with Epidermolysis Bullosa (butterfly skin)<\/h1><\/div>

My name is Kristi\u00e1n, and I have lived since birth with the rare genetic condition Epidermolysis Bullosa (Butterfly Skin). I created this website to show what life with this condition is like and how kind people help me. <\/p>\n

Who I am and what I live with<\/h3>\n

My name is Kristi\u00e1n, and I have lived since birth with a rare disease called Epidermolysis Bullosa<\/strong>, also known as Butterfly Skin<\/strong>. My skin is very fragile and sensitive. <\/p>\n

Large open wounds, blisters, and scabs often form on my body. I have no nails, and the fingers on my hands and toes on my feet are fused and deformed. My condition is physically very painful, and daily life with it is challenging.<\/p>\n

My birth and first days<\/h3>\n

I was born as a typical baby, and doctors initially assumed I was healthy. However, immediately after birth, they took me away and didn’t even have time to show me to my mother. <\/p>\n

My father went to see me and noticed a small red spot on my face. It was only later that doctors informed my parents that I was born with Epidermolysis Bullosa. <\/p>\n

After 3\u20134 days, I was transferred from the hospital in Nov\u00e9 Z\u00e1mky to Bratislava. My mother could only be with me briefly because I was placed in an incubator. My parents visited me every day. <\/p>\n

In the beginning, my fingers weren’t fused or deformed yet, and I still had nails. I was hospitalized in the Bratislava hospital from January to March. <\/p>\n

Childhood and first challenges<\/h3>\n

As a young child, I fell often, and my parents had to be very careful with me. I didn’t yet know that I had to be extremely cautious, and I couldn’t play like other children. <\/p>\n

With every fall, my skin could be damaged very easily, resulting in more painful wounds. At birth, I initially had only a small spot on my cheek, but wounds began to appear approximately 1 to 2 days after birth<\/strong>. <\/p>\n

Treatment and doctor visits<\/h3>\n

During my childhood, we visited doctors very often\u2014not only in Slovakia but also abroad. We visited places like Kom\u00e1rno, Gersekar\u00e1t, or Gy\u0151r. <\/p>\n

Sometimes we went for check-ups as often as 2\u20133 times a week<\/strong>. We also went to Gersekar\u00e1t for longer stays, where we stayed with an elderly lady for a small fee. <\/p>\n

Treating and managing this condition requires a lot of time, patience, and daily care.<\/p>\n

A brief overview of my life<\/h3>\n

1987 \u2013 Birth<\/strong>
\nI was born with the rare genetic disease Epidermolysis Bullosa.<\/p>\n

1987 \u2013 Hospitalization in Bratislava<\/strong>
\nShortly after birth, I was transferred from the hospital in Nov\u00e9 Z\u00e1mky to Bratislava, where I was hospitalized for several months.<\/p>\n

Childhood \u2013 Treatment and frequent doctor visits<\/strong>
\nDuring my childhood, we visited doctors in Slovakia and abroad very frequently.<\/p>\n

Today \u2013 Daily life with Epidermolysis Bullosa<\/strong>
\nEven today, the disease requires daily care, wound dressing, and the use of medical supplies.<\/p>\n

Conclusion<\/h3>\n

Life with Epidermolysis Bullosa is not easy, but I try to manage it as best as I can.<\/p>\n

You can read more information about the condition in the Epidermolysis Bullosa<\/strong><\/a> section or in the article Living with the Disease<\/strong><\/a>.<\/p>\n<\/div>

<\/h3>\n

Video about Epidermolysis Bullosa (butterfly skin)<\/h3>\n