Peter was born at the end of the War, in January 1945, in a bomb shelter. He grew up in a small town west of Berlin, just east of the border between East and West Germany. His parents were both physicians.

The inhabitants of East Berlin and East Germany were not able to go to the West once the Berlin Wall and the Wall between East and West Germany were built in 1961. Starting in 1980 people could apply for a permit to visit the West in case there were important family affairs, like the burial of a relative. One of Sylvine's brothers living in West Germany was able to visit the Z. family a few times, but they were not able to return the visit.

While Peter was studying at the University in the 1960’s he began to have headaches which came more and more frequently. The university clinic told him he was simply studying too hard, that he should relax and enjoy college life more. But he had been doing that all along. When the headaches became more severe, he went back to the clinic. This time they found a brain tumor. His parents had him transferred from the university clinic to the well-known University hospital Charité in East Berlin. He almost died in the ambulance. In the Charité he was diagnosed with VHL. He was operated on for the brain tumor, received very good care, and was followed there for a number of years.

He went back to college, finished his program, and became an engineer, working in radiation protection for a nuclear power plant.

In the middle 1970’s he began experiencing weakness in his arms. His fingers cramped up and he had unbearable pains in the left side of his back. After the removal of a spinal tumor the problems disappeared.

Peter met Sylvine in 1970. She grew up east of Dresden. They were married in 1976. At that time one didn't know that VHL was hereditary. She studied to be a physical therapist in Berlin. When she studied about von Hippel-Lindau disease, she never imagined that her own husband would be affected.

In 1992 Peter had another brain tumor. The recovery from this one was slower — two months in the hospital, and then a month in a rehabilitation center. Sylvine came every day after work to visit and cheer him along.

They have a 16-year-old son, a bright and vigorous boy who was off in Switzerland with his class on a field trip. "But not for skiing," Sylvine said. This was a tourist experience, not a skiing trip. For people who were unable to travel outside their country for forty years, it is very exciting for their teenager to go to another country with his schoolmates. When we went together to visit nearby Colmar in France, it was the second time Sylvine had been out of Germany. Each new step — beyond East Berlin, beyond East Germany, beyond Germany itself — is a new adventure.

Last fall one of Peter's sisters, a pediatrician, read in the Deutsche Arzteblatt, a journal for physicians, an article about VHL by Dr. Hartmut Neumann of Freiburg. She advised Peter to see Dr. Neumann. Peter arranged an appointment at the Albert-Ludwigs University Clinic for a full check-up. For the first time, Peter had a thorough examination for VHL involvement throughout his body. They found some cysts in his pancreas and kidney, neither of which required treatment. He has one spinal tumor which causes problems. He is very happy to know the full story at last, and to have a full idea of what is happening, not just a series of surprises.

Peter and Sylvine came to Freiburg for the Symposium to learn more about VHL. In particular, they are interested in DNA testing. They have sent Peter’s blood sample off to Dr. Hiltrud Brauch in Munich for analysis. They want to find out whether their son inherited the faulty VHL gene or the healthy one, so that they will know how much screening he needs to stay healthy. Peter’s parents’ blood is also being tested, since neither of them has shown any signs of VHL. It may be that Peter is the first in his family to have a flaw in the VHL gene.

As a physical therapist, Sylvine is very health conscious and works hard to keep them on a healthy diet — lots of vegetables and vitamins, and little meat. Peter says he lost all fear of death after an experience once with a coma. He has a strong will to live, and a great optimism about medical progress and improvements in medical techniques. He and his family live a healthy, happy life.

Our thanks to Gerlint Bansberg, Stuttgart, for translation assistance in the preparation of this article.

As published in the VHL Family Forum 2:3, September 1994. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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