The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families

Very informative

Very worthwhile book

I got diagnosed with lupus last month and am trying to educate myself. There is SO MUCH information out there and much of it is conflicting. It can be very confusing. This book is comprehensive on the topic and thorough with the explanations. It’s organized in a common sense way and you can read it through or visit the chapters or topics that you are most interested in. There’s also a website and facebook group where you can find more information and support.

I have read just about every Lupus book out there--from memoir to treatise, from books aimed at neophytes to those targeted at the experienced patient. At this point I could probably write one of my own. But I keep reading rather compulsively, hoping to learn something new that will prove helpful. Usually this task proves rather Sisyphean.But I struck gold when I read this book, far and away the most lucid treatment of the disease I have ever read. Anyone who has Lupus should read it, highlighting it as I did on my Kindle. Anyone who cares for, lives with, or loves someone with Lupus should read it. And (unlike other Lupus books) anyone who treats Lupus patients--as a physician or nurse--should also read it. It is jam-packed with tons and tons of very helpful advice and medical information.However, if you do not have any biology background (as I do) you may find certain portions of the book a bit hard to understand. Just skip them. They are not important anyway. The advice sections, which are extensive beyond belief, do not require any knowledge of science and are very clearly written. I do like that Dr. Thomas has not watered down his book as other physicians do, and that he assumes that Lupus patients can choose to read those sections or not.I hope he realizes that by writing this volume, he will empower the Lupus community (which is huge). Armed with an extraordinary amount of his medical advice--some of it granular and some, not--patients can go to their physicians to ask for critical lab tests and game changing medications. Many Lupus patients are not fortunate enough to have access to quality medical care, for one reason or another. This book may further propel them to be their own medical advocates, and substantially improve their health. It is a must-read.

This book is the most comprehensive I have ever seen about the Lupus condition.It is aimed at those of us who suffer the condition, those who look after those who suffer and health professionals.The book covers all forms of Lupus but concentrates on SLE which is the most common and most serious of the forms of Lupus.The book is divided into several sections and takes you through each point carefully and clearly. It talks about what Lupus is, how it affects people, what treatments are available, what possible side effects each drug and treatment may cause and the more practical side of living day to day with the condition.When one is first diagnosed with Lupus, there is real information overload. It is a very complicated condition and affects different people in different ways. This book allows someone to look carefully at their own situation and to inform themselves about how to cope and what to expect. It takes time to come to terms with Lupus and the condition can and does change over time, this is why this book is such a gold mine of information.There is just one slight downside to this book: it is written by an American specialist and is rather geared towards the American health care system which is much different to our own here in the UK. Some of the drugs have slightly different names and some of the advice in relation to demanding certain tests and procedures from your healthcare team may be an alien concept with the NHS however, the advice and general principles are sound.If you suffer from Lupus or care for someone who does, this book could well be the best investment you make.

When I was first diagnosed with Systemic Lupus, I ran out and bought every book I could find, to try to help me deal with this strange disease. Back then, most of them were written by people who had Lupus and they just told of their experience with it. Since Lupus does different things to different people, those books did not actually help me. I wanted to understand Lupus and how it pertained to me. I have had diagnosed Lupus for 24 years and it has wrecked havoc on my body. If I had understood some of the things that you can find in this book, I would have been better off.This book teaches many things I've learned the hard way and also some additional information. Examples as follows:Never have a live vaccine shot. It will activate the Lupus.The tests you need to have done and what they mean.Some people have a blood clotting problem with Lupus (I did).Some people have to avoid the sun. The sun can activate the Lupus. If so, take vitamin D.Problems that can happen with Lymph Nodes.herbal supplements that can cause flares.Other diseases that you often have, in addition to Lupus.Types of medications that help and those that hurt.Pregnancy and Infertility.I could never start to tell all the things this book covers. It has 874 pages.I dearly wish I had this book when I first started with Lupus. Then I developed Ankylosing Spondylitis and Fibromyalgia. The book tells about those (and many more) too.You won't need any other book.