In this remarkable book, Desiree offers an information rich discussion
of the porphyrias, a group of rare metabolic diseases. She also
discusses her own case, as well as those of many other patients
whom she has helped over the past twenty-five years as co-founder
and Executive Director of the American Porphyria Foundation.
Desiree
embraces the challenges of porphyria with courage and humor and
writes about them in an open and honest dialogue. After twenty-five
years as a medical writer, she has delineated the new and exciting
developments in the treatments of all the porphyrias, offering
explanations about this complicated group of diseases in a readable
manner.
Every patient and family member will derive tremendous
insight and guidance from Desiree’s experience, as well as
vital information to aid in navigating the complexities involved
in confronting and surmounting the porphyrias.
I recommend this book highly to patients with porphyria
and their families—and indeed to anyone who wants to know more
about the porphyrias, disorders about which most doctors know
far less than they should.
Herbert L. Bonkovsky, MD
Director,
Liver-Pancreatic Center, University of Connecticut
Desiree’s
work is a testimonial to the resourcefulness of the human spirit.
Her turning this debilitating illness into the impetus for
helping others through the American Porphyria Foundation,
which she co-founded, is a true inspiration.
Peter V. Tishler,
MD
Harvard Medical School
Desiree brings a unique perspective as an author. Her
personal experience with acute porphyria has enabled her to become
an avid and knowledgeable student of the disease. Her book has
important insights for patients and physicians alike.
Montgomery
Bissell, MD
Director, Gastroenterology and Liver Center University
of California SF
As co-founder and Executive Director of the
American Porphyria Foundation, Desiree has contributed mightily
to addressing the needs of others who suffer from porphyria.
Her book is an inspired, well written and informative account
of her own personal experience with the disease and the knowledge
she has gained from contacts with porphyria patients and their
physicians.
Karl
E. Anderson, MD
University of Texas Medical Branch at Galveston
No
doubt, this book will be consulted over and over again by patients
with porphyria, their families and hopefully also by their physicians.
Claus
A. Pierach, MD, FACP
University of Minnesota
Desiree uses
the best approach to educate people about porphyria by interweaving
medical facts within the context of a human interest story, hers
and those of other people with porphyria.
Joseph
Bloomer, MD
Director, Liver Center, University of Alabama
Porphyria,
A Lyon's Share of Trouble 