Book 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 (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

Book 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 (21)

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!

This book is a life-saver!
I admit I was skeptical at first, but after reading the book, reading the testimonials on the Road Back Foundation's website (www.roadback.org) and looking in PubMed for research that supports Dr. Brown's theory and antibiotic therapy approach, I decided to give it a trial period of 11 months. It's now been 13 months and I am better. This holiday I'm thankful to Henry Scammell for writing this book and the Road Back for educating us through the website; I figured that nobody could make up ALL those testimonials. Soon, I hope to post my own story.

Stories of success and hope from people with no hidden agenda
This book is a testament to those who have chosen a different path to treating this terrible disease, a testament to those who do not blindly accept the advice of rheumatologists trained to prescribe toxic drugs that don't cure the disease but do guarantee return visits and a lifetime of costly lab work.

Thomas Brown had the intellect to discover the truth about rheumatic diseases and the moral courage to live his beliefs.Ask your rheumatologist how many of his/her patients have created a charitable organization in honor of one of his/her treatments.

This book has the answer to this disease.It has saved my life, my immune system, and my sanity. ... Read more

Book Description
Scleroderma is a highly individualized disease. Medical issues and treatments can vary greatly from one patient to another. Yet all patients must face a remarkably similar range of non-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 spent learning about these issues so that the patient can get on with what truly 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

Book Description

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 patient. Conventional care formed the bedrock of her healing metamorphosis. But useful alternative therapies-from a macrobiotic diet to mildly esoteric herbal remedies to magnetic therapy-proved worthy on countless occasions. Scleroderma taught Taylor to take full responsibility for her physical, emotional, and spiritual healing. Nobody else knew her needs as well as she did.

After suffering through her share of incompetent and uncaring doctors, Taylor found Dr. Hal Whitman, an astute rheumatologist who knew scleroderma better than most. He worked with Taylor, listened to her suggestions, and evaluated her progress. Together, they forged a path for Taylor's recovery and renewal, a story she shares in A Place to Go: How Scleroderma Changed My Life.

Customer Reviews (10)

The Common Threads for a Cure
Amazon has once again pointed me toward a very helpful resource in Maureen Taylor's book "A Place To Go".I am a nurse and mother of a son who was diagnosed with Diffuse Systemic Scleroderma three years ago at age 25.As painful as this book is to read, in that it explains so well what a patient with scleroderma experiences, I was warmed by the similarity in our sources of hope that Maureen and I have both sought.I, too, found Dr. Brown and his book the "Road Back" as well as Henry Scammell's book "Scleroderma: The Proven Therapy That Can Save Your Life" both opening the door to antibiotic therapy for this devastating disease.From medication, to yoga to nutrition, Maureen and I have turned to the same things in hope for a reversal of a disease.My son has seen reversal of symptoms, although he is by no means cured as of yet.But we keep exploring the alternative choices.The true key is finding a physician partner in your battle.Traditional medicine plays a role in recovery, but the "traditional" doctor blinded by the "miracles" developed by the pharmaceutical industry truly provide little in the way of providing hope and a cure for this disease.Quick to offer d-Penicillamine or other harmful drugs, many scleroderma patients who haven't found these books, accept these treatments as their fate and live painful, disabled lives.To everyone who reads this book - share your knowledge of its existence and of Dr. Brown and Henry Scammell's book, as you could just be opening a door of hope to someone who needs it. And offer them the Road Back Foundation as a source of support for each other at www.roadback.org.It is people like Maureen, willing to share their story, that will open the minds of the medical community and the patient to the true hope that lies in alternative medicine with some assistance from traditional medicine, by using simple, relatively harmless drugs like the antibiotic Minocin. Spread the word as Maureen's book does so well.

A Place To Go: How Sclereoderma Changed My Life
The author is truly inspiring.Her story motivates us all to be the very best we can be, and to fight our own battles fully.Well worth the read.

A story of Strength
My name is Leslie Geraghty of Wayne, NJ. When I had first met Maureen Taylor, it was September of 2005.Maureen was one of our first customers during our Grand Opening at our Nature Store.
A graceful, well dressed, soft spoken woman. We had spoke on several occassions and I enjoyed our chats. It was my husband who informed me one day of very disturbing news ot this very rare disease that had nearly taken this womans life earlier.As he discribed the hoffics of the physical changes and personal challenges she had faced, I thought for a moment that we must be speaking of 2 different people.When we met again we spoke briefly of the illness. As we spoke it was clear this woman in front of me was the image of strength. hope, and perseverance. Maureen's book goes into some detail of her past as a child in Ireland and the journey here to the US. She goes into great detail of the symptoms that krept up day by day, the numerous Drs visits, tests, and psychological tolls she has encountered.It was frustrating to see the lengths she had to go to, to finally get a proper diagnosis. The relationship between her husband and how his denial and complete unsympathetic being basically turned his back on his wife in need, which finallydid end in divorce. This book completely moved me.I could not put this book down.This is a book of hope, determination, and inner strength.Maureen now opens her home to others who suffer the samerare disease and helps them to cope with the up hill battle they face. I admire Maureen for not only the battle she fought but for what she offers to others who suffer medical problems and frustrations.

A true testament to facing life's journey head-on
Maureen Taylor describes a journey that any of us may take for different reasons.Her path was scleroderma.This memoir is a painfully truthful personal walk which served to bring hope when there was only despair and the challenge to go further when conventional medicine seemed to offer no more answers. It is intensely gripping yet shows how the human condition can lead one to rise above hopelessness and find answers when it seemed there were none left.Giving up was not an option.This is the one rich lesson Maureen's suffering and successes can teach each of us who have the good fortune to read her story.

A Story of Courage and Perseverance
"I found out about Maureen through the Internet and then read her book when it came out. I am alwaysamazed with her knowledge of not only scleroderma, but all the alternative approaches (as well as conventional medicine) she used to assist her in her journey back to health. I also personally liked the fact that she believed in both conventional and alternative approaches for healing as this is consistent with my own view. I am so grateful to her for sharing her experience in A Place To Go. It is easy to see her compassion, honesty, and perseverance- and I believe her attitude and determination ultimately turned her health around.

I, too, was diagnosed with diffuse scleroderma and was told it was progressing very rapidly. Western medicine could only offer me powerful drugs, and, with the exception of my internist, none really believed in the effectiveness of alternative treatments.I chose to try the antibiotic therapy and follow a macrobiotic diet (June-July 2006) in addition to the conventional approach I was already taking. I had been receiving acupuncture, hand and physical therapy and a variety of energy modalities. Within a few weeks of following the macrobiotic diet, I could see a difference in my energy level. Within three months of taking antibiotics, my skin was softening some, the redness and inflammation was decreasing, and I was moving around more easily. It was at this time that I started to decrease conventional medications. It's six months now and my skin is softening more, my energy level is consistent throughout the day and I am finally sleeping through the night most nights. My family and therapists are continually commenting on the improvements. Coincidence (remission due to drugs other than the antibiotics)? I don't think so. I never felt like this on methotrexate (for RA), neurontin, oxycontin (for pain), Ambien, and the small amount of prednisone that I took. Thesedrugs never relieved my severe pain, immobility, or helped me to sleep.

You don't need to have a serious physical illness to benefit from reading A Place to Go. It is an inspiration to anyone going through a grief process or living with/knowing someone who is. This book will be on my recommended reading list for my clients when I get back to work. Thanks to Maureen's own personal triumph-I can envision the day when I will be doing all the things we so often take for granted each day."
... Read more

Book Description

Customer Reviews (6)

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.

A must read for scleroderma patients
This is a wonderful book! As a newly diagnosed patient, I have found this book to be the best book I have read on scleroderma.Not only is it the most comprehensive, but it is extremely well organized and easy to read. The information and guidance the author provides is both practical and uplifting.I was so impressed with this book, I even bought a copy for my doctor!
I highly recommend this book for anyone with scleroderma, regardless of how long they have been living with the disease.

This book is spectacular!
This book is spectacular! It is filled with lots of helpful information to help get you through this disease.The bottom line is: If you are diagnosed with scleroderma, this book is a must have.

A must read for anyone needing to understand Scleroderma
This book was extremely helpful in my quest to better understand what someone very close to me is experiencing.I now have the knowledge and the understanding to help my friend cope with her disease. ... Read more

Product Description
Follow the very personal story of how one woman reversed a deadly auto-immune disease and returned to complete health by discovering the benefits of health frequencies. ... 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
Hannelore Helbing-Sheafe’s constant struggle with her health was a powerful motivator to investigate possible ways to help herself and others.The focus of her practice was always on finding the cause of the problem and instructing patients in using correct nutrients and/or natural medicine and therapy to correct and reverse existing health problems.Her main focus has been to seek balance in all body systems.Connective Tissue Diseases - Holistic Therapy Options provides valuable information about holistic therapy options for patients afflicted with connective tissue (collagen) problems.Detailed information is given regarding current medical diagnostic procedures and treatment, followed by holistic therapy options.The book also provides details about the multiple, complexing symptoms experienced during this illness.Connective Tissue Diseases - Holistic Therapy Options is an education on 'Nature's Pharmacy'. It promises no miracle cures; instead, it lists natural substances that soothe pain, improve circulation, repair and restore connective tissue to normal function, reverse illness to a more manageable level and give the chronically ill patient quality of life and hope. ... Read more

Book Description
Scleroderma is unique among our rheumatic diseases both in its clinical expression and its resistance to recovery when using our usual anti-inflammatory medications.The reason for this difference is now becoming apparent as the biology of the scleroderma process is better understood. It is now recognized that the disease expression is quite heterogeneous and that several different clinical but distinct phenotypes exists.This issue of Rheumatic Disease Clinics provides a concise update of developments in this area of study and covers topics such as vascular disease in scleroderma, diagnosis, management of the disease, genetics, novel treatments, scleroderma-like disorders, and its effect on the heart and lungs. ... 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
“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 (2)

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 ... Read more

Product Description
Over 100 true stories about scleroderma in 5 languages, plus articles by world experts in scleroderma. This book provides top quality medical and support information for people interested in this autoimmune disease. Professional contributors include Prof. Carol Black, Dr. Christopher Denton, Dr. James Seibold, Dr. Maria Trojanowska, Kevin Howell, Dr. Vanessa Malcarne, and Dr. L. Nandini Moorthy. ... Read more

Customer Reviews (2)

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.
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Book Description
Arthritis is usually considered a disease of older adults, but nearly 300,000 children in the United States suffer from some form of arthritis or rheumatic disease, such as juvenile arthritis (JRA), fibromyalgia, chronic fatigue, systemic lupus erythematosus, scleroderma, or Kawasaki disease. Yet until now very little information has been available to guide parents and doctors in properly diagnosing such children.Here is a readable, reliable guide to the common causes of bone, joint, muscle, and arthritis pain in children, designed to help parents and physicians understand these disorders, arrive at the proper diagnosis, and choose the most effective treatment. In this comprehensive resource, Dr. Thomas Lehman--the head of one of the most prestigious pediatric rheumatology programs in the world--offers easy-to-understand information on the causes, symptoms, tests, and treatments for a wide variety of rheumatic diseases and childhood pain.Dr. Lehman writes with great clarity, providing numerous case examples that illustrate the topic at hand and offering practical, down-to-earth advice. Equally important, he answers the questions that parents are most likely to ask: What should they observe in their children? What questions should they ask their doctor? Which tests are necessary? What risk factors should they be aware of? And how can they help their children cope with the social and psychological aspects of their illness. The book summarizes diagnostic tests, discusses the most effective medications, and discusses physical therapy, alternative therapy, and surgical options that are available. Clearly written, thorough, authoritative, and up-to-date, It's Not Just Growing Pains is the definitive resource available on the subject for parents and health care professionals, helping them to understand the children's pain and find the best available care. ... Read more

Customer Reviews (10)

A must have for any parent with a child that has jra
I agree with all of the reviews!My daughter (just turned 3) was diagnosed with JRA when she was 18 months old.I spoke with Dr's and my brother had it as well, so I thought I knew it all!This book gave me MORE understanding and knowledge than ANY dr my daughter or brother saw!I too have a LAUNDRY list of questions to ask at her next visit!!! It was well written and easy for a non-medical person to understand! Hats off to the DR!

You won't regret this purchase
My 2-year old was diagnosed recently with JRA, and after scouring the local library and the internet for every search term imaginable, and reading everything I could get my hands on, I recieved this in the mail yesterday and feel as though I've at least doubled my understanding of rheumatic diseases, and probably tripled it. The book is well written and understadable, without sounding patronizing. I have had multiple appointments with our pediatric rheumatologist, but after reading this I have a whole list of things I want to ask at our next appointment. I especially like how it's organized. The first half deals entirely with rheumatic diseases, their symptoms, diagnosis, and prognosis. The second half discusses the medications, procedures, and methods used to deal with the disease. Parts of it were really scary for me to read because my daughter is so young, but I truly believe knowledge is power, and if you're looking for good info on JRA, Lupus, or other childhood rheumatic diseases, I'd recommend this read.

The Bible
My wife refers to this book as "The Bible" because it appears to be the authoritative source for information on JRA. This disease struck our child in the Systemic Onset version, and after months of fumbling around by the local care providers we got a diagnosis that led us to this book and to an appointment with Dr.Lehman personally in NYC. We found the book to be very useful and after meeting Dr. Lehman we regard it as indispensible. We would highly recommend the book to anyone with a child suffering from this family of afflictions.

The DefinitiveBook on Juvenile Rheumatic Diseases
Thomas J. A. Lehman MD is Chief of Pediatric Rheumatology at the Hospital for Special Surgery, in New York City and also Professor of Clinical Pediatrics at Weill Cornell Medical Center. He is considered the leading specialist in the world. As President of a charity that helps children in Russia, I have asked Dr. Lehman to volunteer his services and speak at seminars in Moscow to hundreds of rheumatoid pediatric doctors.He has done this several times over the past 5 years. He has also visited other countries as well besides allowing specialists from many other countries learn at his side. As a result of his unselfishness he has improved the lives of thousands of children throughout the world. He has written a book that every parent who has an afflicted child should read.My reason for writing this review is to assure the reader the he/she can rely on what it says, as there is no one who is more knowledgeable than the author.As can be gleaned from other reviews, the book has been written to be easily understood by the general reader.

Wonderful - must have for JRA
This is a wonderful book.Published for the first time in 2004, it is up to date with all the new medicines out there.If you have a child with Arthritis, you need this book.It addresses all issues surrounding the disease, the family, behavior, medicine, theories, how to relate to your doctor, etc. ... Read more

Book 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

Book Description
Successful Living with Scleroderma takes a positive, empowering approach to help people improve their emotional and social well-being. By emphasizing your positive potential, this strategy guidebook provides simple, yet effective strategies to help you live well--in spite of this disease.

Inside Successful Living with Scleroderma is a program designed to help you develop coping skills that let you take control of:

* Your body
* Your symptoms
* Your thinking
* Your emotions

You'll find techniques that will help enhance your self-esteem; improve your relationships with your family, friends, colleagues, or health care professionals; and identify the positive aspects of living with scleroderma. ... Read more

Book Description
This digital document is an article from Skin & Allergy News, published by International Medical News Group on February 1, 2002. The length of the article is 578 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: Angiotensin receptor blockers: A note of caution. (Scleroderma Renal Crisis).
Author: Sherry Boschert
Publication: Skin & Allergy News (Magazine/Journal)
Date: February 1, 2002
Publisher: International Medical News Group
Volume: 33Issue: 2Page: 21(1)

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Book Description
This digital document is an article from Internal Medicine News, published by International Medical News Group on April 15, 2004. The length of the article is 544 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: No infections occurred: hand surgery restores function in scleroderma.(Clinical Rounds)
Author: Betsy Bates
Publication: Internal Medicine News (Magazine/Journal)
Date: April 15, 2004
Publisher: International Medical News Group
Volume: 37Issue: 8Page: 26(1)

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Book Description
This digital document is an article from NWHRC Health Center - Scleroderma, published by Thomson Gale on March 16, 2005. The length of the article is 784 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; Diagnosis.
Publication: NWHRC Health Center - Scleroderma (Pamphlet)
Date: March 16, 2005
Publisher: Thomson Gale
Page: NA

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Book Description
This digital document is an article from Skin & Allergy News, published by International Medical News Group on June 1, 2005. The length of the article is 563 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: New scleroderma Tx underway.(Clinical Rounds)
Author: Nancy Walsh
Publication: Skin & Allergy News (Magazine/Journal)
Date: June 1, 2005
Publisher: International Medical News Group
Volume: 36Issue: 6Page: 44(1)

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Book Description
This digital document is an article from Dermatology Nursing, published by Jannetti Publications, Inc. on October 1, 2001. The length of the article is 3809 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.

From the author: Morphea is a frequently mild, benign, and self-limiting skin disease with a less than 1% reported chance of progressing to systemic scleroderma. Morphea is a sufficient and less terrifying name for these disorders than localized scleroderma.

Citation Details
Title: Localized Scleroderma or Morphea?
Author: Julie E. Greenberg
Publication: Dermatology Nursing (Refereed)
Date: October 1, 2001
Publisher: Jannetti Publications, Inc.
Volume: 13Issue: 5Page: 335(7)

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