Epidermolysis Bullosa – my story and life with butterfly skin disease

Epidermolysis Bullosa is a rare genetic condition also known as butterfly skin disease. In this article, I describe my personal story and everyday life with this condition.

What I deal with every day

  • painful wounds on the skin and inside the body
  • difficulty swallowing food
  • daily wound dressings
  • iron infusions
  • chronic anemia (blood loss from wounds)
  • very dry eyes
  • limited mobility

Health issues associated with the disease

This disease is associated with many other health problems. I have wounds not only on the outside, but also on the inside.

My food has to be special, my mom has to blend everything for me because I have trouble swallowing. I can’t swallow hard and large pieces of food. When something goes down the wrong way, even water won’t go down my throat and I often struggle to sort it out.

Kristián Hulala as a young child with Epidermolysis Bullosa

This kind of choking is very painful and can make swallowing problems even worse.

My diet is very limited, as not everything can be prepared and blended in a way I can eat. For example, fried meat, hard cheeses, or sausage. What can’t be blended, I can’t eat – I can only smell such foods.

I regularly go for osteoporosis checkups, as my bones are thinning due to the disease. My teeth fell out when I was 10–12 years old.

I also go for blood tests because I lose blood with the wounds and therefore hemoglobin. I have to go for infusions, and I often have to pay extra for injections.

I regularly go for eye exams, as my eyes are damaged and very dry. I have to pay extra for antibiotic drops and buy the others myself because they’re not on prescription. Without the drops, my eyes would be inflamed, I wouldn’t be able to open them for 3–4 days, and it would be very painful.

Daily care and my parents’ help

My mom has been home with me since I was born because I require 24-hour care. Every day, morning and evening, we do a full body dressing change and during the day as needed.

Childhood and life with Epidermolysis Bullosa in the yard

One morning dressing never lasts until evening. There’s always something to moisturize, bandage, or change a dressing on.

I can’t manage even ordinary things – I can’t scoop food, open a bottle of water, and I can’t carry even 2 kg. I weigh only 43 kg at a height of 180 cm.

My mom is my right hand – she prepares my food, helps with hygiene, and takes care of me in everything. I’m incredibly grateful to her. If I didn’t have loving parents, I wouldn’t be here today.

My father drives me to checkups because I can’t go by ambulance due to the risk of infection. Instead, we have to pay for fuel.

I have weakened muscles – I can walk a maximum of 15 meters and I’m immediately tired, out of breath, and have to sit down.

Life at home and my hobbies

I’ve been on disability pension since I was 18, as I can’t work.

Life at home with Epidermolysis Bullosa at the computer

I spend most of my time at the computer. I’m interested in technology, videos, articles, and various interesting things from the world of science and space. I like watching YouTube and occasionally playing games.

I also spend a lot of time with my dogs and go on short walks with my mom.

Therapeutic stays by the sea

When we manage to save up, we go on healing stays by the sea in Croatia.

Healing stay in Croatia by the sea

I can’t go into the sea because the salt would make my wounds worse. However, the iodine air helps me, which supports healing and breathing.

The change of environment helps me a lot. In Croatia I feel better than at home, which is very strange to me, but at the same time encouraging.

My dogs

I have two Yorkie dogs who are like family to me. They bring me joy and help me not think about the pain all the time.

Seasons and Christmas

Christmas and life with Epidermolysis Bullosa

What I love about summer is that I can be in the yard and relax. In winter I love Christmas – its atmosphere, decorations, and peace.

I watch Christmas movies from October onwards and I can’t imagine December without them 🙂

Thank you for your help

Thanks to you, in 2019 I was able to buy an electric wheelchair AirWheel H3s and a powerful gaming PC.

I’m glad that thanks to my parents I’ve made it this far and today I’m 39 years old. Despite all the problems, I try to live as best I can.

I use all financial donations exclusively for medicines, vitamins, and medical supplies.

To everyone who decides to help me, I thank you from the bottom of my heart.