I have revived a youth group of German RP-Association called Pro Retina Deutschland in 1997, together with a girl named Simone Brucker from Bochum. Nearly 500 young people with RP, Usher or Macula Degeneration are within this group, but only few are active members.
In short words some facts about me:
I received the diagnosis of RP when I was twelve years old. Nobody else in my family, neither grandparents nor great grandparents have had any problems with their eyes.
For long time I don't want to hear anything about RP. I repressed it (with success). Of course sometimes I've felt down in regard of an uncertain future, but mostly I wanted nothing do with it. I wasn´t able to believe that it could be helpful to speak about RP and the related problems with other people. Now I'm knowing it better and as often I can I´m telling it everybody in the youth group. It is quite difficult to convince younger people about it. I certainly know that I thought similar only a few years ago. I never went to a convention of German RP Association, but one day I started slowly to take an interest in this regard (and not to my disadvantage).
It is difficult for us as the brains of the youth group to get in contact with the young patients, because they are still very active and not so much handicaped as the older people. Due to the fact that we are only able to give some good advices, we try to improve the contacts between each other. Furthermore we have made a newspaper for youth which published probably twice a year. We offer excursions at weekends and founded some regional youth group all over Germany which meets often.
Young people has other interests, problems and worries than older people with RP. We try to help them and have understanding for the new difficult situation in their changing life after the diagnosis. Everything seems to be different after this moment.
More details about me:
In spite of my handicap I am very busy. Three times a week (totally 14 hours) I go to school, where I study business administration and economics, after my regular job as head of commercial branches and shipping manager. After 4 years school I am much more qualified and I think this is very important if you have RP. Furthermore I play in a soccer team, and I´m at the volunteer fire brigade and in its managing comitee. A "little bit" of time I also need for the youth work at the German RP Association and my friends. I love to travel through the world (as long as I´m able to enjoy it).
Meantime my life has an other kind of quality. I feel more conscious of it and I'm simply trying to make the best of the situation. Nevertheless the small things in a humans life become more important and I feel satisfied.