|  |
| Customer Reviews: | | Average Customer Review: ( 3 customer reviews )
Write an online review and share your thoughts with other customers.
Most Helpful Customer Reviews
4 of 4 found the following review helpful:
Voices of Scleroderma Vol 3 Mar 09, 2006
By Judith R. Devlin
"Judith R. Thompson Devlin"
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!
1 of 1 found the following review helpful:
VOICES OF SCLERODERMA Oct 15, 2008
By Ladybug
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.
3 of 4 found the following review helpful:
Terrific for Scleroderma/Autoimmune Patients, Caregivers, and Doctors! Feb 04, 2006
By Shelley L. Ensz
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
|
| | |
|
|
