Anthony Camnetar remembers the first time he was told that he had von Hippel-Lindau syndrome, a rare genetic disorder. He was 12 years old and his mother, who had just picked him up from school, broke the news through tears realizing the health challenges her son would face for the rest of his life.
While he didn’t fully understand it at the time, Anthony – now 23, married, and a father – would later grasp the significance of that day years later when it came time to remove the dozen tumors that had sprung up throughout his body. He would start down a path that would result in multiple surgeries at different hospitals and long and frustrating periods of recovery.
His journey would ultimately lead him to University of Rochester Medical Center (URMC) urologist Ahmed Ghazi, M.D., who would build an exact replica of Anthony’s kidney – complete with tumors – allowing him to practice the complex surgery Anthony required long before he went under the knife.
A Race Against the Clock
The gene responsible for suppressing tumors is flawed in von Hippel-Lindau syndrome, resulting in uncontrolled cell grow and division. This, in turn, can give rise to tumors in multiple organs which typically
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