In 1990, my ophthalmologist told me that I suffer from Usher Syndrome. This news came as a blow. At that time, there was no Internet yet and little was known about Usher. Half an hour later I stood outside ….. stunned, shaken and finished with treatment! How to go from here? I tried to ignore it and to live a normal life as much as possible. Of course, this was not easy, for I often felt a disaster approaching that sooner or later would make me lose my eyesight and my hearing. This meant that I often had to give up on things. Eventually, I lost my job at the surgical department where I had worked for 33 years in anaesthesia. After I had stopped working, I found out that there is an Usher expertise centre in the Radboud UMC. I was pleasantly surprised to hear that they were doing research into a treatment for Usher Syndrome. I went to Nijmegen straight away for an examination and to register in their database and, if possible, participate in scientific research. I also came into contact with the Stichting Ushersyndroom for which I really like to work as a member of the Medical Advisory Council. My objective was a solution for every Usher, both young and old.