vhl alliance
VHL Patient Vignettes

Personal stories, thoughts, and tips submitted by people dealing with the diagnosis of von Hippel-Lindau

Paperback – February 1, 2015


This compilation of vignettes is designed to help people newly diagnosed with von Hippel-Lindau (VHL) and their loved ones understand what they can expect. Realizing that there are so many different perspectives, we chose a format of vignettes by collating stories, recommendations, and tips from VHL patients and their families. Life with any rare genetic condition is not without its challenges, but the messages of the contributors are fairly universal: VHL is not insurmountable; Prevention is key; Staying proactive is the most [a patient] can do; Step up and become your own greatest advocate; You have VHL, VHL does not have you; You can totally do this. As this book came together, it became clear that it was more than a story about living with VHL. It is a book about inspiration and hope! You’ll see that “….everyone has a story…. turn it into strength for yourself.” Each of us can learn from the teachings in this book!