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VHL HandbookWhat you Need to Know about VHLA Reference Handbook for people with von Hippel-Lindau Disease, their families, and support personnel
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Copyright 1993, 1997, 1999, 2005, 2012 VHL
Family Alliance
International edition 4.0, Revised, 2012
ISBN
1-475007-59-0
DISCLAIMER
This book is intended to add to, not replace, conversations between a patient and a physician, as the specific details and the patient’s total health situation need to be considered in making the final decisions about treatment. The content of the book should not be taken nor relied upon as medical advice on how to treat your specific manifestation of this condition. Rather, by providing context and understanding, we hope that this book will empower the patient to be a better partner in his or her own care, and will facilitate constructive conversations between patient and physician.
| Friendship is born at the moment when one
person says to another, "What, you too? I thought I was
the only one." – C. S. Lewis |
Table of Contents |
VHL in the Brain and Spinal Cord
Considering Stereotactic Radiosurgery
VHL and Your Reproductive Health
Pre-Implantation Genetic Diagnosis
3. Diagnosis, Treatment, and Research
5. Suggested Screening Guidelines
Commonly Occurring VHL Manifestations
Preface
This information has been compiled to help individuals with VHL, their families, and other interested people understand VHL. The information presented here is intended to add to conversations with physicians and other health care providers. No brochure can replace personal conversations and personal advice about questions on treatment.
One of our primary goals is to give affected individuals and their families greater confidence in the future. With early detection and appropriate treatment, there is more hope today for families with von Hippel-Lindau disease than ever before. Recent research on VHL and related diseases has led to better methods of diagnosis and treatment. Knowledge is increasing rapidly by the open sharing of information throughout the world among families, health professionals and the research community.
We acknowledge the important contributions to this booklet of our many collaborators and reviewers, both family members and physicians. Knowledge and effective treatment of VHL has been accelerated since 1993 through international cooperation, fostered in particular by symposia:
- Freiburg, Germany, 1994, led by Dr. Hartmut Neumann
- Honolulu, Hawaii, USA, 1996, led by Drs. Y. Edward Hsia, Berton Zbar, and J. M. Lamiell
- Paris, France, 1998, led by Dr. Stéphane Richard
- Rochester, Minnesota, USA, 2000, led by Dr. Virginia Michels
- Padua, Italy, 2002, led by Dr. Giuseppe Opocher
- Kochi, Japan, 2004, led by Dr. Taro Shuin
- London, Ontario, Canada, 2006, led by Dr. Stephen Pautler
- Roskilde, Denmark, 2008, led by Dr. Marie Luise Bisgaard
- Rio de Janeiro, Brazil, 2010, led by Dr. Jose Claudio Casali da Rocha
- Houston, Texas, 2012, led by Dr. Eric Jonasch
and by several extensive research projects—in the United States under Drs. W. Marston Linehan, Edward H. Oldfield, and Russell R. Lonser; in England under Dr. Eamonn Maher; in France under Dr. Stéphane Richard; in Germany under Dr. Hartmut Neumann; and in Japan under Dr. Taro Shuin. Local language editions have been prepared and are being updated by a number of our country affiliates worldwide.
Revision 4, 2012, updates the clinical information throughout, reflecting the many advances in screening, diagnosis, treatment, and quality of life. It is clear that the best way to manage VHL is to identify issues early, monitor and treat them appropriately with minimal invasion and damage, and focus on long-term health. The VHL Family Alliance looks forward to working with you and your medical team.
This book is available in print or electronic version from major book sellers worldwide.
This text is also available over the Internet, both as a Web service and for download as pdf or e-book. See www.vhl.org.
Please note that the VHL Handbook Kids’ Edition, specifically geared toward children and their families, is also available in multiple languages in print, e-book, or pdf.
Throughout this booklet, words that may be new to readers are printed for the first time in italics. Definitions of these and other medical terms related to VHL appear at the back of this booklet. A “sounds-like” spelling is also given for some words.
Suggestions and comments to make future editions of this booklet even better are always welcome
— Joyce Wilcox Graff, Editor, VHL Family Alliance,
January 2012
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