The Scleroderma Book: A Guide for Patients and Families

Good basic information that can help family and friends understand what is happening. My only problem it was written in 2009. Although, in listening to some of the doctors currently it sounds like they don't know much more about the disease than they did when the book was written. The author has a Scleroderma clinic in Houston where my daughter saw a specialist.Found it used but it was in perfect shape. I would recommend it. It's a good place to start.

This is a great first book for anyone with scleroderma. It provided me with good information of things I didn't know yet from searching the internet. I was diagnosed with scleroderma in June 2017, and I decided then I would do everything I could to battle it. It definitely is not a party. I also decided though, that right from the beginning, I would approach this with the most positive outlook that I could. Starting right out from the gate, I thought it might be difficult for me to do, considering I've lived with depression for much of my life. Instead, it has been possibly one of the best things that happened to me. I know, I know... that sounds crazy, but I've researched as much as I can about scleroderma and have changed my life for the better. I have omitted soda and started drinking only filtered water, from glass bottles only (plastic can leech chemicals into the water). I used to eat alot of processed and fast food, because it was easy... and of course, tasted pretty darn good lol! Now, I only eat whole foods, without sugar and gluten free as much as possible. I make my own yogurt, sauerkraut, sour cream, cream cheese and kombucha (they all give your GI tract good bacteria and different probiotics. Experts say that your gut contributes so much to your immune health and inflammation. If it's in disrepair [ie: leaky gut], it's very detrimental to your health). Also, researching and then adding various supplements is contributing to my better health. Overall, I've felt better than I ever had in my life, and this sounds contradictory... although my body is normally wracked with pain much of the day (some days are fair, some are pretty crappy... it's basically a way of life now, and I'm handling it), my sense of well being has improved.Now, I'm not saying that there are days when I'm really, really mad. Sometimes I just think that it's just not fair that this is happening. But that's ok. You're definitely allowed to have these days...it can actually give you some fuel to add to your fire to survive. It usually only lasts a day for me, then I'm back on track, being as positive as I can.I'd recommend this book, as any extra information you can learn about your condition will give you ammunition against it. Another thing I'd recommend to anyone with scleroderma... Try to find the best doctor you can so you'll have the best support throughout your journey. Unfortunately, I first went to the doctor who my PCP referred me to. She prescribed a medication containing an antibiotic, which completely obliterated the good bacteria in my gut. I honestly do not know what she was thinking. It actually gave me Candida, and landed me in the hospital. This is why I adopted the diet I spoke of earlier. I'm still fighting it.... and I've almost beat it.You can look at having scleroderma any way you like, but it certainly makes it easier if you keep your attitude positive as much as possible. There are also other books on Amazon about scleroderma. I recommend "Holding on for dear life" by Liz Devivo. It isn't informational, but it's about Liz, "giving practical and beautiful insights on coping and surviving a catastrophic illness."If you've got scleroderma, good luck with your journey. There is the International Scleroderma Network, ISN, which is the supportive organization for persons with the condition. It is also a good resource for people with scleroderma.

Because this book is one of the few "out there" on this subject, I went ahead and bought it despite its publication dates: originally 1999, then 2005. The book overall is pretty well- written and subjects are organized into understandable categories. At 211 pages, with big font, the book is a little on the short-side It does, however, contain what appears to be useful info, assuming that is, that the info still holds true 16-22 years later. For example, in discussing acid reflex, it makes a clear distinction between "normal" reflux, and reflux associated with scleroderma: the former is typically brought on by certain foods, while the latter is much more frequent and can happen with any type of food. In summary, book does provide a useful intro to the disease, but as a current reference, its value is limited.

I purchased this for a newly diagnosed friend. Yes, the second edition is 12 years old. But I still found it relatively easy to understand, with helpful hints & useful information, in regard to both physical and emotional aspects of the disease. The chapter on potential kidney involvement in 20% of patients is one that should be read by everyone with scleroderma - because unlike many aspects of the disease that are slow in onset, the spike in blood pressure it can cause (with few symptoms) may lead to relatively quick and irreversible kidney damage and the need for dialysis. The physician/expert/author of this book therefore recommends self-testing of blood pressure twice a week for all scleroderma patients, and seeing a doctor if it spikes for 3 or more days in a row (with ACE inhibitor drugs used to bring pressure back to normal, and saving your kidneys!) . This crucial information for the patent -in and of itself- is worth the price of the book (I only paid $5 used- in excellent condition).

Reading other reviews I was confused as to what to expect. Yes, you can google everything and a lot will come up. Remember however that when this book was originally written, it was when hardly any info was available. Dr. Mayes literally wrote the book on Scleroderma when no one else did. She has it all in one place for you. The internet sometimes especially for newly diagnosed can be very scary. I remember just googling and thinking I was dying in less than 10 years. I recommend this book and cannot wait for Dr. Mayes to update it again.

This is a very life changing personal disease that baffles most doctors. This books offers information in a very clear tone and well balanced overview of a seldom well understood disease. As a caretaker of someone with the disease for almost 10 years from original diagnosis and almost 30 years of symptoms is enlightening to read such a resource from a doctor in the trenches. Hope to reach out and meet the author to express our gratitude for sharing her experiences.

I needed this book to find out about the disease. My wife was diagnosed and her symptoms are surfacing, so I wanted to stay informed.

This book on Scleroderma should be part of every scleroderma patient's medical library. It is well-written,informative, and easy to use.

very helpful book for anyone diagnosed with this rare condition,lots of information,gives you a detailed idea of what questions to ask your doctor and what the disease is all about.

Very useful and easy to read book which is a good guide certainly for families of sufferers.

This is a very good overview of Scleroderma. It is an older book so some parts need updating but it is still a very useful book. I was diagnosed about a year and a half ago and was recommended this book as a starting point. I am now re-reading it a year and a half later and still find it a good reference. The chapter on managing all your doctors is very appropriate. I currently have 11 doctors between Canada and the US and find it very important to keep track of all the reports and test results and make sure all the doctors have all the information. The author also talks about some of the psychological effects of chronic illness and she is right, you have control of your attitude and if you need help, seek it out. Thanks for writing such a good book and it would be great if you could update it.

Not sure if I had the second edition of this book but I found it a bit of a disappointment. I found much more information on YouTube sessions lead by Virginia Steen.

Was easy to read and understand. Found it helpful for me personally. Was disappointed that there were no references to Australian Clinics and self help groups. Majority was in America.