Living with HV

In the final post from the Roosenboom family, and to help recognise Rare Diseases Day, Simone has penned her own piece on her experiences with Hydroa Vacciniforme. We are grateful to the Roosenboom family for being able to share their story.

Hi, all.

My name is Simone and I’m almost fifteen years old. I got ill when I was nearly six; exactly nine years prior to the day I wrote this. You can read all about that in the previous blogs written by my father.

The first years, my illness troubled me, but it got worse when I turned ten years old. The year 2007 turned out to be a horrific year for me. I got a bit older and more aware of myself and the way my surroundings reacted to my appearance. I looked quite scarred and felt that I was different. Quite a lot of people acted in a way that strengthened that feeling: they looked at me with horror. My parents and I got quite upset with that, even to the point that my mother told these people in anger that I was contagious so they would quickly get away from us. I thought it was funny but in the end it didn’t change anything.

The situation at school got worse also. I was bullied, called names and treated like an outcast. They called me a zit and fatty because of my blisters and overweight. It made me sad and angry and I kept it all in. The bullying lasted several years: far too long for me to handle. Something in me broke. At age twelve, I was that angry that I considered it being better not to live than go on this way. I had really had it with the situation.

The last months of primary school I avoided school and went to a psychologist, but that didn’t solve much. Only when I went to middle school things turned to the good for me. I got a nice welcome and felt I could make a new start. People treated me normal and I made some nice friends, who still are there for me when I need them. Most of the bullying stopped, although sometimes there was a lack of understanding when for example gym class was held outside in warm and sunny weather and I had to stay indoors. If only they knew that I would have loved it! Nowadays I’m in third grade of middle school. Classmates sometimes asked me what disorder I was suffering from and what caused it. So I gave a lecture in class once. I meet a lot of understanding now, which feels really good.

Last summer I noticed that I was doing a bit better, I mean, parts of my body started to react less severely to UV-radiation. I even went to the beach the last day of the vacation, wearing protective clothes and sunscreen but not on my lower arms and –legs. That was so cool! And I had no blisters afterwards! After over eight years I felt the wind blowing softly along my legs. So simple, yet so special!

Image reference

Simone today, courtesy of the Roosenboom family

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