Until Roberto's diagnosis in 1990, none of the Italian doctors he had consulted knew enough about VHL to do a complete screening and make a coordinated treatment plan. All his treatments were planned only to solve a particular problem at a particular time, without taking into account the more general situation and possible future recurrences. The family feels that there is still little knowledge about VHL in Italy , as most doctors still consider it quite rare and not worth an investment in learning. As readers of the VHL Family Forum know, knowledge about VHL is not widespread in any country. I could certainly relate similar examples in Germany.
Doctors learn from every patient, even when they already know a lot about a disease.
I certainly learned from my experiences with this family. I was surprised how well informed they were. They taught me about gamma knife and linear accelerator treatments. I was disappointed that we found more tumors in Roberto's kidneys than we had seen on the CT, resulting in the loss of one kidney. This convinced me not only that we should use intravenous contrast medium, but that the timing of the injection and the imaging should be calculated to give optimal detail on the pictures of the normal and abnormal kidney structures.