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VHL Handbook
What you Need to Know about VHL
The VHL Handbook
What you Need to Know about VHL
A Reference Handbook for people with
von Hippel-Lindau Disease, their families, and support personnel
Click here for a downloadable
file in pdf format
Copyright 1993, 1997, 1999, 2005, VHL
Family Alliance
International edition 3.0, Revised, 2005
ISBN 1-929539-05-3
Table
of Contents 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 diagnosing and treating it. Knowledge about VHL is
increasing rapidly through 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 moved forward with greater speed 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
and by several extensive research projects —
- in the United States under Drs. W. Marston Linehan and Edward
H. Oldfield;
- in France under Dr. Stéphane Richard;
- in Germany under Dr. Hartmut Neumann;
- and in Japan under Dr. Taro Shuin.
Local language editions of this Handbook are available in French,
German, Spanish, Portuguese, Dutch, Italian, Ukrainian, Japanese,
Chinese and other languages will be prepared as required.
Revision 3, 2005, 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.
We look forward to working with you and your medical team.
This text is also available over the Internet, both as a Web
service and for download. See www.vhl.org.
Throughout this booklet, words that may be new to readers
are printed in italics. Definitions of these and other medical
terms related to VHL appear at the back of this booklet. [or
click words that are marked like this in the online version] A “sounds-like” spelling is also given for some
words.
We will appreciate your suggestions and comments to make future
editions of this booklet even better.
Joyce Wilcox Graff, Editor
January 2005
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
VHL Family Alliance
Thomas D. Rodenberg, Esq., Chairman of the Board
Joyce Wilcox Graff, M.A., Executive Director
Directors:
Altheada L. Johnson, M.S., R.D.
Eric I. Lipp
Thomas A. Lusk
Robert E. Schoenhals
Joseph M. Verdi, Ph.D.
Bruce S. Weinberg, J.D.
Clenton G. Winford II, Ph.D.
Council of International Affiliates:
Gerhard Alsmeier, Germany
Gilles Bohlinger, France
Gilles Brunet, France
Kan Gong, M.D., P. R. China
M. Luisa Guerra, Italy
Vibeke & Richard Harbud, Denmark
Chris Hendrickx, Belgium
Pierre Jacomet, Chile & Latin America
Valerie & Jon Johnson, New Zealand
Jennifer Kingston, Australia
Susan Lamb, Canada
Jill Shields, Canada
M. Shinkai, Japan
Helga Süli-Vargha, Ph.D., Hungary
Hélène Sultan, France
Hanako Suzuki, Japan
Erika Trutmann, Switzerland
Paul & Gay Verco, Australia
Karina Villar, M.D., Spain
Michael Walker, Australia
Mary Weetman, M.S., United Kingdom
The VHL Handbook:
What You Need to Know About VHL
Third edition, Revised, 2005
ISBN 1-929539-05-3
Copyright 1993, 1997, 1999, 2005, VHL Family Alliance,
All rights reserved
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