My story – Johannes

My name is Johannes and I am from Munich, Germany. I was born in 1979 with ABS. My both hands, my left foot and one toe of my right foot are affected. Shortly after my birth, I almost lost my left foot. Nearly all fingers on my both hands were grown together. A doctor (now a respected doctor in the field of plastic surgery) of the university hospital in Munich “Klinikum Rechts der Isar” operated my fingers on both hands and left foot. In over 20 operations he severed finger by finger. It was a huge discussion because my doctor wanted to do all operation in my baby time. In this time normally they did such kind of operations when you grow up. On one site it was good to do it so early after birth because I can’t remember but later I have problems with the relationship with my mother. In the 80th it was very hard to be “not normal”. In the kindergarten, in school and somewhere else everybody gave you the feeling to be different. That was and is still really hard for me. Every time my parents wanted to give me the feeling that I am “normal” and I could do everything what every other children can do. But I was never normal and it is not normal now. You can feel the looks every day and everywhere. I still fight against this feelings.

After round about 20 years of internet it is my first time that I search for my „problem“ in the internet. Don’t ask me why I waited such a long time. Maybe the reason is that I thought I am just the only one. My parents told me such kind of story. But now I know that there are more outside in the word.

My reasons to write my story (and believe me that is just a short part of it) are that I want to learn more about other people to handle with it, to help other similar person and parents to help them.