vhl alliance
VHL Handbook

by The VHL Alliance (Author)


A reference handbook for people with von Hippel-Lindau, their families and support personnel. Updated 2015. The VHL Handbook is a compact summary of information essential to managing the health of a person with von Hippel-Lindau disease (VHL). Designed to be read by patients, their physicians and members of their health care teams, it explains how VHL occurs, how to monitor and test for possible medical issues, and common treatment options to be considered. VHL is a cancer syndrome, in which tumors may occur in one or more of six different organ systems. The tumors of VHL occur also in the general population, but for people who may experience multiple tumors in the same organ, special attention is required to keep organs healthy throughout the patient’s lifetime, while avoiding the worst consequences of cancer. With early detection and careful management, there is more hope today for people with VHL than ever before. This book is designed to foster constructive teamwork among the patient, family, and the various health care professionals who will be involved in care.