Kristian and life with Epidermolysis Bullosa (butterfly wings)

Let me introduce myself.

My name is Kristian, I am 36 years old and since birth I have been suffering from a rare skin disease that affects only a few percent of humanity. The disease is called Epidermolysis Bullosa (butterfly wings), and it has several forms, I have the most severe – the dystrophic form.

My disease is physical and very painful and manifests itself in the way that I have open wounds all over my body, even several centimetres large and deep, blisters, scabs and my fingers and toes are deformed, I have to have a mixed diet as my throat is also damaged, I have a narrowing in my oesophagus and I also have problems with digestion.

I have been on disability pension since I was 18 years old as I cannot do any work. My mum has been at home with me all day since I was born as I need 24 hour care, she looks after me and nurses my wounds.

My hobbies are the computer, which I spend most of my time at to keep in touch with the outside world and my friends, I am also with my little dog a lot 🙂 but my parents and I also go outdoors a lot for walks.

But you can read more in the “About me” section. You can also find a more detailed description about my disease Epidermolysis Bullosa and besides my “biography” you can also find an article about me from the newspaper Nový čas or a photo gallery.