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7 of 7 found the following review helpful:
Essential Reading for all Scleroderma Information Feb 24, 2005
By A. S. Knaggs
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!
5 of 5 found the following review helpful:
Dr. James Seibold, Chair of ISN Medical Advisory Board Jan 27, 2005
By Shelley L. Ensz
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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