The First Year: Scleroderma: An Essential Guide for the Newly Diagnosed

by Karen Gottesman, Daniel E. Furst (Foreword)

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 (TM)--Scleroderma is illustrated with charts and tables, and offers an invaluable guide for everyone learning to live with their diagnosis.

320 pages, Paperback

First published January 4, 2003

Reviews

[Iona Stewart]

This book is extremely well-written and well-organized. It seems to deal with everything you could possibly want to know about scleroderma. Though I didn’t find anything about my own main symptom – my legs feeling completely blocked, which I read somewhere else was one of the symptoms.

The book was too focused on American conditions to my taste. There is a chapter about assembling your medical team. Firstly, in my town in this country – Denmark – it might be difficult to find even one GP who knows anything in particular about the disease. I haven’t found one – and I certainly wouldn’t be able to find a whole medical team. But most of the readers of the book will presumably be Americans, and the chapter will no doubt be helpful to them.

I can only say that the writer is so thorough that I got an excellent impression of the book as a whole, but in practice didn’t find it helpful in any way.

Also I was put off by some of the author’s comments such as her congratulating us on becoming “professional patients”, as though this could be a virtue. And I felt that reading the book with all the focus on various serious symptoms could contribute to worsening one’s condition.

I had to stop reading the book before reaching the end and, as stated, didn’t really personally get anything out of it, except the knowledge that the disease has many different forms and symptoms, some of the latter being life-threatening (which wasn’t really encouraging). I also learnt that Raynaud’s phenomenon, which I suffered from long ago, and Sjögren’s syndrome, can be accompanying conditions to scleroderma.

From what I did read I didn’t see anything about how to hinder the development of the disease, so I think I will attempt to get hold of another book/other books which focus more on this aspect.

[Annelise]

Being diagnosed with a rare dissease like scleroderma, learning that this might also be deadly dissease, AND a cronic dissease takes the breath from everyone. This book gives you down to earth information of your first year with scleroderma, how to cope with things, and what you must be aware of.

Things are not always easy.

This book helps you put words on feelings and worries. Can be used as an encyclopedia.

[Sophie]

One of the first books I read after I was diagnosed. Extraordinarily helpful.