Product Description
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. ... Read more

Customer Reviews (23)

Have you noticed?!
Have you noticed that almost all the five-star reviews of this book are actually "testimonials" copied from the book, itself?! Apparently these were all inserted either by the author or the editor. Such a thing should not have been allowed.

I owe this book my life
I knew exactly what scleroderma is when I got my diagnosis.I'd suspected it for three and a half years.I had researched its symptoms.I new about its progression.I knew about my life expectancy.What I didn't know was how it was treated.Once I got my diagnosis, I researched all of the top clinics.I researched all of the medications they used, and their efficacy.I found out most of them have been proven to do nothing in clinical trials.I was really depressed.I felt that there were no options.Then, I found this book.

I thought the title was cheesy.I thought the idea was too good to be true.I bought the book.I read the book.Henry Scammell wrote an easy to read, easy to understand history of how antibiotics came to be used to treat scleroderma.He explains that scleroderma starts because of a bacterial infection.He tells us about the research that has been done, and the way doctors treat with antibiotics.He also tells us the story of a real woman who was severely impacted by the disease and has made a full recovery -- and, by the way, as of today,January 2, 2010, is still healthy and scleroderma-free after nearly twenty years.

This book exposed me to an approved treatment option that I found discussed no where else, and many rheumatologists don't even offer patients.It empowered me to take the next step, and start researching to find out if this worked for other people, who they are, how sick they were, how long they took the medication, how long they've been well, and if they'd had a recurrence.After doing my own research, I began looking for an experienced rheumatologist who had treated many scleroderma patients with antibiotics.I felt strongly that what Scammell explained about the bacterial vector for scleroderma was consistent with the history of my disease, and the treatment seemed valid, and relatively harmless compared to the other medications offered.

After five months of antibiotic therapy, my symptoms are almost unnoticeable, I have energy, and feel great.I expect to continue my treatment until I am in remission. After a four mile hike up hill in September, my oldest son wrapped his arms around me and said, "Mom, I'm so proud of you for researching what you needed to do to get well, and sticking with it and doing it, so our family can have times like these." My husband thanks you, my children than you, and I thank you, Henry Scammell, wherever you are.

A must read for RA or Sclerderma Patients
I have a patient with Sclerderma on this therapy and the condition is reversing!Not bad for an incurable disease. This is a book written for patients and non-medical personnel, but is extremely helpful for both.

I highly recommend the book and therapy.

Treatment worth a try!
My wife has Scleroderma, and prior to starting this treatment could barely get out of the bed. After close to a year on the antibiotic treatment, she is doing much better. Some of the stories in the book can be a bit scary for someone recently diagnosed with Scleroderma, but the book is definitely worth the money and could change your life. Also, look at www.arthritistrust.org and roadback.org.

Results are reality - take the Road Back to your health
My 25 year old son was diagnosed with diffuse systemic scleroderma. I turned to Amazon to find something to read about the disease, to educate me about what he would face given this diagnosis. I read a book written by a scleroderma patient who was severely ill with the disease and receiving the "conventional" treatments recommended by rheumatologists and promoted by the pharmaceutical industry. It was quite depressing to say the least.My son, being a knowledgeable biologist, refused such treatments. Thanks to Amazon, 6 weeks later, I received an e-mail suggesting that I may be interested in reading Scleroderma: The Proven Therapy that Can Save Your Life by Henry Scammell. Within days, I contacted representatives from the Roadback Foundation mentioned in the book, was given a physician's name to contact and my son began treatment with the antibiotic protocol. This is not a treatment you will see advertised in every magazine. It's been around and available for use for many years, it's safe, effective, inexpensive and it works for the vast majority of patients suffering and being needlessly debilitated from the diseases of not only Scleroderma, but Lupus and Rheumatoid Arthritis. Dr. Thomas McPherson Brown successfully treated thousands of patients and attempted to get the word out about this effective treatment for over 50 years, but as his patients' recovery was "anecdotal" and not scientifically proven, it was not accepted by the scientific community. Why would you not try a treatment that bears little risk and works? To every parent and patient who has had one of these diagnoses handed to them, read this book, turn to people who can help and get your life back. As a nurse of 30 years who has administered disease modifying drugs to many patients, I am very grateful to Amazon, Henry Scammell and the Road Back Foundation for letting me know of safer, more effective options. To the reviewers who fault this book as promoting a foundation, may you or a loved one never be personally affected by one of these diseases. The information that this book and the foundation provides might save your life!
... Read more

Product Description
Scleroderma-a chronic autoimmune condition that causes hardening, thickening, or tightening of the skin and attacks the heart, lungs, kidneys, and gastrointestinal tract-is extraordinarily difficult to diagnose and can take a huge toll on the psychological well-being of the individual. From the first moment of her diagnosis, author Karen Gottesman took charge and educated herself on every aspect of her condition. Now, as a "patient-expert," she guides those newly diagnosed step by step through their first year with scleroderma. She provides crucial information about the nature of the disease, treatment options, diet, exercise, social concerns, emotional issues, networking with others, and much more. The First Year™-Scleroderma is illustrated with charts and tables, and offers an invaluable guide for everyone learning to live with their diagnosis. ... Read more

Customer Reviews (8)

Scleroderma
This Book was such an easy read, easy to follow and has helped me understand this condition which I have. A must read if you have Scleroderma!!! Very imformative!!!!

It's Like Advice From A Good Friend Who's Been There
If you are newly diagnosed, I highly recommend this book.It's a comforting read, and who doesn't need comfort at this time?Please consider adding it to your patient toolbox.

Excellent Book!

My teenage son was recently diagnosed with a form of Scleroderma (Morphea) that is believed, at this point, to be only localized.However, the endless tests have continued as we try to define the parameters of his disease and condition.This book has been EXTREMELY helpful to me in understanding all the "doctor speak" in plain English so I feel less overwhelmed with the enormity of it all.

I HIGHLY recommend this book if you or a loved one has been diagnosed with this very rare, difficult to understand disease.

Restores a sense of control of your own destiny
I cannot say enough about this book. After being diagnosed I felt completely terrified and powerless. This book walks you through things you can do to ensure you receive the best treatment possible. Full of great facts about scleroderma that my doctor either didn't know or just didn't tell me. Really stresses the fact that you must be your own advocate and that is a great impetus to get out of bed and do everything you can. Emotionally supportive, just a wonderful book (that came for me at exactly the right time).

For a scleroderma victim, a comprehensive overview
I purchased this for my niece who was just diagnosed with scleroderma and her medical team were not educating her as to the long term affects and prognosis associated with this disease. After reading the book, she was able to quiz her physicians on those points she needed clarified and has been very satisfied with this book's comprehensive overview for the newly diagnosed scleroderma patient. Highly recommend this book. ... Read more

Product Description
The MediFocus Guidebook on Scleroderma is the most comprehensive, up-to-date source of information available. You will get answers to your questions, including risk factors of Scleroderma, standard and alternative treatment options, leading doctors, hospitals and medical centers that specialize in Scleroderma, results of the latest clinical trials, support groups and additional resources, and promising new treatments on the horizon. This one of a kind Guidebook offers answers to your critical health questions including the latest treatments, clinical trials, and expert research; high quality, professional level information you can trust and understand culled from the latest peer-reviewed journals; and a unique resource to find leading experts, institutions, and support organizations including contact information and hyperlinks. This Guidebook was updated on April 21, 2010. ... Read more

Product Description
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 quality of life. Dr. Mayes begins with an easily accessible description of the basic facts, distinguishing between the many manifestations of the disease, ranging from localized scleroderma (small patches of hardened skin, most common in children, which tend to clear up over time) to systemic scleroderma, which can attack the lungs, the kidneys, and the blood vessels, and can be life threatening. Equally important, she offers sympathetic and reassuring advice on matters that often concern patients, such as the best course of action for those who want children, what to do if the disease affects your sex life, and what you can do to help your doctor treat your illness more effectively. The book concludes with a good humored, frank discussion about how to cope, day in and day out, with an uncertain future--how to be a "person living with" scleroderma, not a "victim suffering from" it.The new edition has updated chapters on the genetics of scleroderma and on new treatments for complications of this disease.Touching on virtually every aspect of this disorder, The Scleroderma Book provides a reliable source of information and reassurance for patients of any age and no matter how severe their form of the disease.Endorsed by the leading national advocate group, The Scleroderma Foundation ... Read more

Customer Reviews (3)

The Scleroderma Book
I've recently been diagnosed with Limited Systemic Scleroderma. This book opened my eyes to what the future might be for me. It answered a lot of questions I had. Just made me feel as though I have some control over this disease. WONDERFUL!!!
For me Knowledge concerning my health is extremely important.

Best Scleroderma Book Ever
This will teach and inform you, in layman's terms, everything you need to know about Scleroderma.I've read everything I could get my hands on about this horrible disease and this book is the best ever.Thank You, Dr. Mayes.

The Scleroderma Book
The book was recommended to me and turned out to be as good as promised. An excellent resource for a basic, easy-to-understand-by-a-lay-person description of scleroderma, including its symptoms, variations, possible treatments, what to expect.My daughter was recently diagnosed with the disease and our family is gathering as much as information as possible to know what it is and how deal with it.
... Read more

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 ProgramChair, ISN Medical Advisory Board ... Read more

Customer Reviews (5)

VOICES OF SCLERODERMA
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.

Voices of Scleroderma Vol 3
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!

Terrific for Scleroderma/Autoimmune Patients, Caregivers, and Doctors!
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

Essential Reading for all Scleroderma Information
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!

Dr. James Seibold, Chair of ISN Medical Advisory Board
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. TheSCTC 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.
... Read more

Product Description
An autoimmune disease in the family with Lupus, Rheumatoid Arthritis, and Polymyositis, Scleroderma afflicts hundreds of thousands of people in the United States. And yet there are very few sources of information for men and women with this disease. Now, in The Scleroderma Book, one of the nation's leading authorities provides a comprehensive guide written specifically for patients and their families.Dr. Maureen Mayes has drawn on her extensive experience treating scleroderma to provide up-to-date, practical information that will help patients manage their symptoms and improve their quality of life. Dr. Mayes begins with an easily accessible description of the basic facts, distinguishing between the many manifestations of the disease, ranging from localized scleroderma (small patches of hardened skin, most common in children, which tend to clear up over time) to systemic scleroderma, which can attack the lungs, the kidneys, and the blood vessels, and can be life threatening. Equally important, she offers sympathetic and reassuring advice on matters that often concern patients, such as the best course of action for those who want children, what to do if the disease affects your sex life, and what you can do to help your doctor treat your illness more effectively.The book concludes with a good-humored, frank discussion about how to cope, day in and day out, with an uncertain future--how to be a ""person living with"" scleroderma, not a ""victim suffering from"" it. Touching on virtually every aspect of this disorder, The Scleroderma Book can be used as a reliable source of information and reassurance for patients of any age and no matter how severe their form of the disease. ... Read more

Customer Reviews (11)

Disease Specific Information Easily understood by Patients
Some books about scleroderma are clearly written with the medical community in mind and are way to technical for the average person. This book is directed to the average person and wrote in a way that can be easily understood by those who do not have medical experience. I highly recommend this book to every person with scleroderma and to ever person that is interested in learning the facts about this disease. Get your copy today!

comprehensive and clearly written
As a nurse practitioner, I felt that the info in this book was very comprehensive... I also felt that the language was well written in commonly-used descriptive terms, so that any lay person could also understand the content.Very helpful info and practical advice.

A must have for the newly diagnosed.
Before this book my husband and I felt lost trying to find answers.It answered all of our questions from what lab work needed to be done to why I might be having certain symtoms.I even recommended this to my Docter to tell his other patients about. This is a must for everyone diagnosed and family alike.

Highest Endorsement from International Scleroderma Network
As President of the International Scleroderma Network (www.sclero.org), this is one of my favorite books to recommend for all scleroderma patients and their family and friends.

Dr. Mayes is a world leader in the field of scleroderma and her clinic is a member of the international Scleroderma Clinical Trials Consortium (SCTC).

Moreover, Dr. Mayes is an extremely popular speaker at scleroderma events, due to her clear, friendly, and down-to-earth style.I have met her, and I have also heard from a great many of her patients, all of whom have spoken very highly of her.

If your life has been affected by scleroderma, GET THIS BOOK NOW.You'll be happy you did!

An extreme disservice to Scleroderma patients
Dr. Mayes's book gives a well-written account of how scleroderma progresses in a patient unabated.However, to subtitle this book "A Guide for Patients and Families" is grossly inaccurate.Dr. Mayes misses the mark when she fails to discuss or even mention antiboitic therapy as a treatment.Her condescending advice on coping with scleroderma was particularly distasteful. ... Read more

Product Description
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. ... Read more

Customer Reviews (1)

Dr. James Seibold, Chair of ISN Medical Advisory Board
This is Dr. Seibold's introduction in the ISN's Voices of Scleroderma Volume 2, the second book in this series. 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. ... Read more

Product Description
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 quality of life. Dr. Mayes begins with an easily accessible description of the basic facts, distinguishing between the many manifestations of the disease, ranging from localized scleroderma (small patches of hardened skin, most common in children, which tend to clear up over time) to systemic scleroderma, which can attack the lungs, the kidneys, and the blood vessels, and can be life threatening. Equally important, she offers sympathetic and reassuring advice on matters that often concern patients, such as the best course of action for those who want children, what to do if the disease affects your sex life, and what you can do to help your doctor treat your illness more effectively. The book concludes with a good humored, frank discussion about how to cope, day in and day out, with an uncertain future--how to be a "person living with" scleroderma, not a "victim suffering from" it.The new edition has updated chapters on the genetics of scleroderma and on new treatments for complications of this disease.Touching on virtually every aspect of this disorder, The Scleroderma Book provides a reliable source of information and reassurance for patients of any age and no matter how severe their form of the disease.Endorsed by the leading national advocate group, The Scleroderma Foundation ... Read more

Customer Reviews (3)

The Scleroderma Book
I've recently been diagnosed with Limited Systemic Scleroderma. This book opened my eyes to what the future might be for me. It answered a lot of questions I had. Just made me feel as though I have some control over this disease. WONDERFUL!!!
For me Knowledge concerning my health is extremely important.

Best Scleroderma Book Ever
This will teach and inform you, in layman's terms, everything you need to know about Scleroderma.I've read everything I could get my hands on about this horrible disease and this book is the best ever.Thank You, Dr. Mayes.

The Scleroderma Book
The book was recommended to me and turned out to be as good as promised. An excellent resource for a basic, easy-to-understand-by-a-lay-person description of scleroderma, including its symptoms, variations, possible treatments, what to expect.My daughter was recently diagnosed with the disease and our family is gathering as much as information as possible to know what it is and how deal with it.
... Read more

Product Description


Answers do exist for seemingly incurable diseases. The information contained in this book applies to a diverse variety of conditions ranging from ADD, Autism, Scleroderma, and MS to psoriasis and eczema. We all have the ability to reach good health by changing to the correct materials such as dental, clothing and furniture.

This book follows Jane Parker's journey from the diagnosis of systemic Scleroderma, a fatal autoimmune disease, to good health. After a year of unanswered questions, numerous doctors and alternative practitioners, she finally received a correct diagnosis of Scleroderma. In researching the disease she found there was no known way to cure it.

All existing information held no hope for survival – and definitely none for a reversal, but this didn't stop her search to cure this deadly disease. She tried many different approaches, from conventional medicine to alternative therapies with no apparent results or answers to her problems.

She finally found the answer through Victor Dyment, a Russian healer/scientist who has been doing research into the effects of different materials on health. Victor found the answers that can help reverse many diseases, not only Scleroderma. Under Victor's guidance she is the first one who has completely reversed this irreversible condition.

This book describes the many steps Jane took, including the failures as well as the triumphs, in her struggle to overcome this deadly disease.

This book follows Victor's research from its beginnings in Russia to the development of his Health Frequency theory and the effects of materials on our health.

With the increasing awareness of environmental health hazards this book is vital for both children and adults.

By sharing these experiences and knowledge, we want to make your journey to health a lot shorter than Jane's.

... Read more

Customer Reviews (3)

lacking information
The book leaves big question marks.The site refered at the end of the book does not reply to those questions. If Jane and Victor realy wanted to write a book to help others would give more information.
At times it seems a publicity book for a specific healer.Then the name of the book is wrongly chosen.
What are these cloths and bedding and furniture? where is important info about nutrition? etc..
Never the less ,if read as a novel then it is interesting to see the journey of a person at the other side of the globe with the same illness.

Not HelpfulInformation
This book was a peresonal journey of one woman with Scleroderma. However the title gives the impression you are going to receive medical and practical information in dealing with the illnesss. This is not the case. It is misrepresented by the title. This book is all about a woman's belief in a "healer" Yet she used every medical opportunity to treat herself. I really wanted to throw this book across the room while reading it. It offered no valid information. It just read as if she was absolutely crazy. And worst there was no information about the means of "healing" from this person. It was all vague "you'll know what's right" and you have to find the right healer rhetoric. This book should be catagorized as fiction. What a disappointment.

DON'T WASTE YOUR MONEY
This book was a big disappointment.It gave no helpful information and seemed very farfetched.The only good thing in this book was it showed the writer's determination to find a successful treatment for this disease.But it gave you no answers and was vague the whole way through.It mentioned different things in your surroundings to change to improve your health, such as fabrics and furniture, never mentioning what those fabrics were.At the end of the book it gives you a website.The website is nothing more than a place selling CD's and information supposedly to unlock this secret.Complete waste of money. ... Read more

Product Description
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to scleroderma (also Familial Progressive Systemic Sclerosis; Morphea; Progressive systemic sclerosis; Systemic Sclerosis), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on scleroderma. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. ... Read more

Product Description
Scleroderma is a highly individualized disease. Medicalissues and treatments can vary greatly from one patient toanother. Yet all patients must face a remarkably similar range ofnon-medical issues, such as:

Determining their role as a patient;
How to find the right doctor;
Understanding insurance issues;
Pros and cons of alternative medicine;
Family & caregiving issues;

The purpose of this book is to reduce the time and energy spentlearning about these issues so that the patient can get on with whattruly matters:

Making the most of their medical choices ... Read more

Customer Reviews (6)

Reviewed by SclerodermaSupport.com
This is a book from someone who has traveled the route with his wife to learn about scleroderma and to obtain quality medical care and necessary assistance. Many avenues they traveled are shared in detail. The author clearly wrote this book in an aim to assist others taking the same path he, his wife and his family were forced to endure.

Just what I was looking for!
I got this book for my mother who was diagnosed with scleroderma 5 months ago. It answered questions that we hadn't even thought of yet. The chapters on finding the right doctor and getting information on the Internet were the best. This is a great resource.

Useless except for U.S. patients
I found this book completely useless, although I suppose it may be helpful to U.S. patients.It seemed to me to be a catharsis for the writer, nothing else. As a patient suffering from scleroderma, I wasted my money, and the book ended up in the garbage after I had looked through it. I think it should be made clear that this is not helpful to patients or their families living outside the U.S.

Excellent book of practical healthcare resources
As webmaster of Scleroderma from A to Z ..., I highly recommend this book for people affected by scleroderma, but with one caveat:

Read the last chapter of this book first!

Although Mike wrote this book for those affected by scleroderma, it is a very practical guide that would be of great benefit to anyone dealing with a chronic or severe illness.

The book presumes that the reader has a certain level of knowledge about the various types of scleroderma.It is not a book about scleroderma symptoms or treatments (see Dr. Mayes' book for that), but rather deals on a higher level of how to successfully navigate the complex world of healthcare, health insurance, and Internet healthcare resources.

Mike truly saved the best for last in this book, by sharing his no-holds-barred, gripping and searing story of his family's nearly unbearable struggle with systemic scleroderma. Online we sometimes joke about "Kleenex alerts".Mike's story goes far beyond a mere Kleenex alert; with brazen honesty, he unerringly strikes to the heart and soul of the depths of pain and the heights of love experienced by any family coping with a fatal illness.

If you think you already know how to navigate healthcare, insurance and the Internet, get this book anyway, and read the last chapter.That alone, I guarantee you, will be worth it's weight in gold.

Excellent book of practical healthcare resources
Read the last chapter of this book first!

Although Mike wrote this book for those affected by scleroderma, it is a very practical guide that would be of great benefit to anyone dealing with a chronic or severe illness.

The book presumes that the reader has a certain level of knowledge about the various types of scleroderma.It is not a book about scleroderma symptoms or treatments (see Dr. Mayes' book for that), but rather deals on a higher level of how to successfully navigate the complex world of healthcare, health insurance, and Internet healthcare resources.

Mike truly saved the best for last in this book, by sharing his no-holds-barred, gripping and searing story of his family's nearly unbearable struggle with scleroderma. Online we sometimes joke about "Kleenex alerts".This story goes far beyond a mere Kleenex alert; Mike unerringly strikes to the heart and soul of the depths of pain and the heights of love experienced by any family coping with a fatal illness.

If you think you already know how to navigate healthcare, insurance and the Internet, get this book anyway, and read the last chapter.That alone, I guarantee you, will be worth it's weight in gold. ... Read more

Product Description
A DRM free eBook.

Scleroderma - Types Diagnosis And Treatment 1
What Are The Symptoms Of Scleroderma? 1
Cardiac Involvement In Scleroderma 2
Coping With Scleroderma And Its Effects 2
Crest and Scleroderma 3
Digestive System Involvement In Scleroderma 4
Gastro-intestinal Involvement in Scleroderma 5
Having Lungs Involved In Scleroderma 5
How Does Renal Involvement In Scleroderma Develop? 6
Limited Scleroderma - Causes, Symptoms And Treatment 7
Limited Scleroderma Or CREST 7
Living With Scleroderma 8
Lung Involvement In Scleroderma 9
Managing Life With Scleroderma 9
Pulmonary Involvement With Scleroderma 10
Scleroderma And Elbow Pains 11
Scleroderma and Renal Crisis 12
Scleroderma And The Digestive System 13
Scleroderma And The Kidneys 13
Scleroderma Lung Disease 14
Sclerosis And Joints 15
Symptoms, Causes And Treatment Of Scleroderma 15
Systemic Sclerosis: Background, Diagnosis And Treatment 16
Treatment For Scleroderma 17

... Read more

Product Description
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading."Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing.This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so. ... Read more

Product Description
This digital document is an article from Nephrology Nursing Journal, published by Thomson Gale on January 1, 2006. The length of the article is 1880 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Scleroderma: a case presentation.(Continuing Education)
Author: Sara Otterness
Publication: Nephrology Nursing Journal (Magazine/Journal)
Date: January 1, 2006
Publisher: Thomson Gale
Volume: 33Issue: 1Page: 39(5)

Distributed by Thomson Gale ... Read more

Product Description
Webster's bibliographic and event-based timelines are comprehensive in scope, covering virtually all topics, geographic locations and people. They do so from a linguistic point of view, and in the case of this book, the focus is on "Scleroderma," including when used in literature (e.g. all authors that might have Scleroderma in their name). As such, this book represents the largest compilation of timeline events associated with Scleroderma when it is used in proper noun form. Webster's timelines cover bibliographic citations, patented inventions, as well as non-conventional and alternative meanings which capture ambiguities in usage. These furthermore cover all parts of speech (possessive, institutional usage, geographic usage) and contexts, including pop culture, the arts, social sciences (linguistics, history, geography, economics, sociology, political science), business, computer science, literature, law, medicine, psychology, mathematics, chemistry, physics, biology and other physical sciences. This "data dump" results in a comprehensive set of entries for a bibliographic and/or event-based timeline on the proper name Scleroderma, since editorial decisions to include or exclude events is purely a linguistic process. The resulting entries are used under license or with permission, used under "fair use" conditions, used in agreement with the original authors, or are in the public domain. ... Read more