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| View Larger Image | Voices of Scleroderma (Volume 3) | Paperbackby International Scleroderma Network (Author)
| List Price: | $19.99 | | | Available: | Usually ships in 24 hours |
| | Binding: | Paperback | | Publisher: | International Scleroderma Network | | Page Count: | 336 Pages | | Publication Date: | January 17, 2006 | | Sales Rank: | 495,981th |
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EDITORIAL REVIEWS |
Product Description
“I highly recommend this book for patients, caregivers, and medical professionals who want quality medical information and support for scleroderma and related illnesses. “Access to high quality reliable modern information is crucial to patient well-being and outcomes. The realization that ‘you ARE NOT alone’ has therapeutic value in its own right. “The nonprofit International Scleroderma Network (ISN) and its website at www.sclero.org enjoys a well-deserved reputation for top-notch medical and support information and services from both the patient and medical organizations throughout the world. Each book in this series features enlightening articles from esteemed scleroderma researchers as well as over 100 unique patient and caregiver stories from 16 countries and in 5 languages. “It is only with a partnership of patients and scientists in a concerted worldwide effort that we will solve the riddle of scleroderma.” James R. Seibold, M.D. Director, University of Michigan Scleroderma Program Chair, ISN Medical Advisory Board |
CUSTOMER REVIEWS (Average Customer Rating: 5.0 based on 5 reviews)
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VOICES OF SCLERODERMA by Ladybug (Lake Waccamaw, NC)  5 Stars
October 15, 2008
Having being diagnosed with scleroderma 13 months ago, I found the narratives written by other scleroderma patients to be quite informative. I had never heard of scleroderma until diagnosis. Until a few weeks ago, everyone that I learned about that had had scleroderma in my area had died. There was no one to talk to that had a first hand experience with the disease. I've only recently learned about another individual that has scleroderma and we plan to meet for lunch in a few days. Maybe we can start our own little suppport group.
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Voices of Scleroderma Vol 3 by Judith R. Devlin (Newport, New Hampshire) 5 Stars
March 09, 2006
As a scleroderma patient I needed to tell someone and found the International Scleroderma Network. A website that lets one tell their scleroderma/auto-immune stories. I became involved as a volunteer and with suggestions and collaboration with the President and founder of the ISN we started collecting stories. The results are three volumes of personal, heart warming, tragic, amazing personal stories from all over the world.
We gathered medical articles from the most renown scleroderma specialists around the world also. The results speak for themselves- Three terrific books.
Everyone has a story to tell. These are personal scleroderma stories with lots of helpful tips and medical information.
If you have scleroderma or know someone with scleroderma, this book, Voices of Scleroderma Vol 3 (and Vols 1 and 2) are worth the read and/or gift.
Help spread awareness of scleroderma. Buy This Book Today!
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Terrific for Scleroderma/Autoimmune Patients, Caregivers, and Doctors! by Shelley L. Ensz (Edina, MN USA) 5 Stars
February 04, 2006
Keep in mind that I'm a tad prejudiced, being a co-editor of the book -- but in my opinion, it is absolutely fabulous, and the very best book that our nonprofit International Scleroderma Network (ISN) has published in this series!
This book series was written by over 100 site visitors to our sclero.org website along with leading world experts in scleroderma, as well.
For patient story content, it features over 100 stories, from people in 16 countries, and in 5 languages!
For medical content, it begins with an outstanding article on Systemic Scleroderma by Dr. Marco Matucci-Cerinic and Dr. Irene Miniati, both from Italy. Dr. Matucci is founder of EUSTAR, the European league of scleroderma centers, and VP of the SCTC (its American/European counterpart of experts), and he serves on our ISN Medical Advisory Board.
There is also a terrific article on Juvenile Sclerodema by Dr. Fernanda Falcini of Italy, complete with wonderful illustrations for children by Sherrill Knaggs. Sherrill is our ISN News Guide. Her inspiring story is in Volume 2, and her mother, Ione Bridgman, who is 89 years old, painted the book covers for this series.
We also drew in a world expert in scleroderma-like illnesses, Dr. Laszlo Czirjak of Hungary, for an overview of the many illnesses that are in the category called "scleroderma-like". Many of us have illnesses that are quite similar to systemic or localized scleroderma, but perhaps with a different underlying trigger or symptoms.
This book series is the best of both worlds -- both patient and medical aspects -- with quality information and top notch support, from people who really know what it is like to live with scleroderma, as well as stories from people who have lost their loved ones to scleroderma or related illnesses.
This book series is not biased, in the sense that the stories are not selected for representing either the best or the worst of scleroderma. Rather, the stories express the full range of possibilities from (comparatively) mild to severe to fatal. It's not just happy stories from people who are doing great in managing their illness, nor is it entirely filled with folks who are down in the dumps about it, either.
Each of the books in this series includes chapters on other autoimmune diseases as well, including those who are still undiagnosed.
Reading this book, or any of the books in this series, should make anyone with scleroderma or similar autoimmune or arthritis diseases (or chronic illnesses) feel like they are truly not alone. And, even if you feel educated and supported enough by being a member of our online website services or support groups -- just imagine the enlightenment a book like this can make for your friends, families, co-workers -- and doctors!
In a few weeks there will be a "Search Inside" feature activated on Amazon for this book.
Don't even hesitate -- Get this book and/or get the whole series! It's an outstanding labor of love and expertise from all your friends at the International Scleroderma Network (ISN) at www.sclero.org, which features over 1200 pages of scleroderma information, in 22 languages, and online support groups 24 hours a day.
You'll be very glad you did!
Love & Warm Hugs,
Shelley Ensz
President
International Scleroderma Network
www.sclero.org
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Essential Reading for all Scleroderma Information by A. S. Knaggs (Auckland, New Zealand) 5 Stars
February 24, 2005
My elderly mother and I, have recently received our copies of Voices of Scleroderma: Volume 2. Although my mother had seen the copy I purchased earlier, she didn't borrow it as she said she'd wait for her copy. Now she has it she can't leave it alone! She keeps reading it, and then thinking she'd better go and do her household chores! The latest news was that she'd lost her spectacles and couldn't find them to read some more!
We both appreciate our copies immensely, and see the tremendous amount of work which obviously went into the book! My mother wants to say that she, along with me, realizes the huge amounts of time and effort which were involved in such a book, and we are finding it very interesting.
I personally have scleroderma of the diffuse, systemic type, and although I have told my mother a great deal about scleroderma, it seems to be hitting home more now that she is reading the book. She agrees that she has almost certainly had a limited version of it most of her life, and that her father probably did too! He was never a really well man, and had dreadful Raynaud's Disease, stomach problems, lung problems, migraine headaches etc. Need I say more? I wonder if his father also had it? My mother has similar problems to those her father had, plus a few more. While I am not able to walk due to the scleroderma, have very disabled hands, and am on kidney dialysis, with other issues also, all caused by the scleroderma.
My story, along with many others is in this volume, and I heartily recommend it to anyone wanting to learn about scleroderma, be they patients, relatives, friends, caregivers, or just someone wanting to know what it is! It is a total life changing disease, and everyone who has it, or knows someone with it, hopes fervently a cure will soon be found!
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Dr. James Seibold, Chair of ISN Medical Advisory Board by Shelley L. Ensz (Edina, MN USA) 5 Stars
January 27, 2005
This is Dr. Seibold's introduction in Voices of Scleroderma Volume 2. Dr. Seibold is Chair of the ISN Medical Advisory Board. He is Professor of Internal Medicine and Director of the University of Michigan Scleroderma Program in Ann Arbor, Michigan, USA.
We welcome you to Voices of Scleroderma, a major contribution from the International Scleroderma Network (ISN). Scleroderma occurs in only around thirty people per million per year. Therefore, since it is so uncommon, patients have great difficulty finding access to expert care or even another similarly afflicted patient with whom they can share their experience.
Access to high quality reliable modern information is crucial to patient well-being and outcomes. The realization that "you ARE NOT alone" has therapeutic value in its own right.
I am Chair of the ISN Medical Advisory, a scleroderma researcher, and a member of the Scleroderma Clinical Trials Consortium. The SCTC is an international charitable organization of academic centers dedicated to elevating the pace and quality of scleroderma research. The SCTC works closely with the ISN in the education of both patients and caregivers.
I have been interacting with the ISN on a variety of fronts, most notably in our shared goal of providing up to date and accurate information to the scleroderma community on a worldwide basis. Over the past six years, I have watched the amazing development of the site that Shelley Ensz created at www.sclero.org. I have seen it evolve from her personal site of one page to become the ISN site, now encompassing over one thousand pages in eighteen languages.
The ISN site has brought together both the medical and patient communities from throughout the world. According to the recent TrustGauge Report of Internet traffic, it is in the top one hundred thousand of all Web sites, far ahead of all other scleroderma-related sites.
In my view, the primary reason for this stellar success is the high quality of site content, as well as the multilingual, international reach, which is also an important driving force.
Remarkably, the ISN has a small team of committed, dedicated volunteers who have seized the amazing capabilities of the Internet to provide exceptional, worldwide service and assistance to patients with scleroderma.
More notably, from this enterprising site, the ISN has in turn developed into a thriving nonprofit organization. It is really a classic example of reversing the order of development. Rather than an established organization simply developing a Web site, a remarkably effective Web site developed into a full-service charitable organization.
The ISN expands upon its cyberspace outreach by publishing Voices of Scleroderma. Every volume in this book series features articles from esteemed scleroderma researchers as well as over one hundred patient and caregiver stories, from sixteen countries, and in five languages.
The ISN enjoys a well-deserved reputation for top-notch medical and support information and services from both the patient and medical organizations throughout the world. Today, over five dozen dedicated volunteers, including many doctors and translators, operate the ISN.
Our ISN Medical Advisory Board includes illustrious experts in this field, such as Dr. Luis Catoggio of Buenos Aires, Argentina; Dr. Marco Mattucci-Cerinic of Florence, Italy; Dr. C. Stephen Foster of Boston, Massachusetts; Dr. Janet Pope of London, Ontario; Dr. Frank van den Hoogen of The Netherlands; and Dr. Shinichi Sato of Kanazawa, Japan.
Dozens of other renowned leaders in their field also generously lend their expertise to the ISN, primarily as contributing authors, medical editors, scientific advisors, and translators. All of our ISN volunteers met and work only through the Internet. Their efforts have made quality medical and support information on this rare disease available worldwide.
I hope you find this book of value, and that you also consider offering support to the ISN. It is only with a partnership of patients and scientists in a concerted worldwide effort that we will solve the riddle of scleroderma.
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SIMILAR PRODUCTS |
| The Scleroderma Book: A Guide for Patients and Families
by Maureen D. Mayes M.D. (Author)
The Scleroderma Book has long been considered the leading source of information for patients suffering with this disease. Now comes the Second Edition of this highly respected volume, extensively revised by Maureen Mayes, M.D., the leading authority in this field. Writing specifically for patients and their families, Dr. Mayes draws on her extensive experience treating scleroderma to provide up-to-date, practical information that will help patients manage their symptoms and improve their...
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| Scleroderma: The Proven Therapy that Can Save Your Life
by Henry Scammell (Author)
Scleroderma, which affects as many as 400,000 Americans, starts off like skin cancer but is far more deadly. This new edition is updated with new information about the best therapy for this disease, including the results of the landmark first, and a new, second clinical trial of the only therapy to report reversal and remission of this deadly disease.
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| Voices of Scleroderma Volume 1
by International Scleroderma Network (Author)
A comprehensive book of scleroderma medical and support information, with articles by world experts in scleroderma and caregiving, as well as over 100 true stories from those affected by scleroderma.
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| A Place to Go: Complete Healing of Body and Spirit
by Maureen Taylor (Author)
For two years, author Maureen Taylor's health slowly deteriorated as she was pursued by a relentless but mysterious illness. It disfigured her face, turned her hands into claws, and left her skin as hard as a board. In 1988, she finally learned the name of the disease that was ravaging her body: scleroderma. Scleroderma was more than just a disease it was also Taylor's teacher. It taught her that the world of medicine is a confusing labyrinth and the only map worth using belongs to the...
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