Andreas and I have been friends for many years and we look back on many shared experiences. He was one of the first people who helped me accepting the diagnosis of Myotonic Dystrophy. Even with the best possible support, this is often and again a painful process for which many affected individuals sometimes take many years.
As a support group facilitator in Switzerland, I am involved in the community of others affected and their family members in Europe. In this capacity I have heard many life stories. In many faces I have seen hope and confidence, but also some tears. Many of these stories happen in secret. Many remain unheard.
Every single story is important. This picture and book project is an invitation. When we share our history and our experiences with others, we impart a great deal of knowledge to better manage this disease and, at the same time, sensitize the public to our worldwide existence.
I am pleased to be able to give this community - to all of us - a face together with Andreas.
I have known Erich for over 20 years. Right at the beginning of our friendship he told me about his mother, who was suffering from a muscular disease, called Myotonic Dystrophy. I got to know her and was surprised how she was able to maintain a great deal of independence despite the restrictions. This encounter with her has really impressed me.
When Erich told me that he was also affected by this disease, I was better informed about this topic.
The years went by and we temporarily lost contact. Three years ago, we met again and since then we spend part of our free time together.
I told him about the donation of a collection of pictures in my possession and that I would like to use it for a good cause. Erich is involved in the community of those affected. Since I'm interested in the subject, I visited with him numerous support group meetings to learn more about the lives of those affected. In long constructive discussions, the idea for the picture- and book project emerged, which we now realize together.