Living with Lupus by Philippa Pigache

Lupus is a disease in which part of the immune system becomes overactive and attacks the body's own tissues, damaging the performance of the skin, joints, kidneys and other organs. The condition can make life a misery with symptoms such as rash, extreme fatigue, joint pain, muscle aches, anaemia and general malaise. It can also cause problems with pregnancy. Lupus was once considered a life-threatening disease, but in recent years, improved understanding and more sophisticated drug treatments provide better outcomes, and the quality of life of those with the disease has been greatly improved.

The majority of those with lupus are women of childbearing age and Living with Lupus includes material on those planning a family. It also covers:

• different types of lupus
• diagnostic testing
• the organs affected by lupus
• treatment options
• related conditions and complications
• self-help and improving quality of life.

Contents

Introduction — the wolf and the butterfly

• Recognizing lupus — the wolf's spoor
• Who develops lupus, where and why — the prey of the wolf
• The causes of lupus — finding the wolf s lair
• Diagnosing lupus — on the trail of the wolf 1: in the surgery
• Diagnosing lupus — on the trail of the wolf 2: in the laboratory
• Treating lupus with drugs I — keeping the wolf from the door
• Treating lupus with drugs 2 — call the huntsman
• DIY lupus management — taming the wolf
• Seven lupus-like conditions — sheep (and goats) in wolf's clothing
• Lupus and pregnancy — the wolf and the ewe
• 'Foretell the future' — will the wolf one day become extinct?

Glossary
Useful addresses
Further reading
Index

Introduction
The wolf and the butterfly

What is Lupus? Ask the medical experts and they will tell you it is an autoimmune disease. Its full name is systemic lupus erythematosus, or SLE, though we will be referring to it as 'lupus' for short. The 'systemic' indicates that it affects many organs — the whole system. The 'erythematosus' — from the Greek word for red — describes a certain kind of rash and refers to the part of the body most noticeably affected in lupus: the skin. Until the nineteenth century, lupus was thought of only as a skin disease. In fact the name was almost certainly applied to other diseases affecting the skin on the face, not to what we know as lupus today.

lupus' is the Latin for wolf and the name was coined seven centuries ago by the medieval physicians Rogerius and Paracelsus to describe facial lesions that 'ate' into the skin, and looked like a wolf bite. These days, doctors think it more likely that such lesions were caused by a form of tuberculosis, rather than what we now call lupus.

In the past it was also sometimes called lupus vulgaris, or common lupus. This was to distinguish it from a slightly different kind of rash — raised circular discs — which was called discoid lupus for obvious reasons, and which is now considered to be a different version of the same disease — systemic lupus erythematosus.

So forget about the wolf. Think instead of the butterfly. This delightful creature is used accurately to describe a characteristic rash that appears on the faces of many people with lupus, spreading from the bridge of the nose to fan out across the cheeks (in colouration anything from rose pink to angry red) — erythematosus.

The fact that the illness affected other organs was not appreciated until the end of the nineteenth century. At this time it was discovered that lupus involved inflammation of the joints — arthritis — fatigue, and a number of other physical symptoms including potentially fatal kidney damage.

Once the link between the skin rash and fatal kidney disease had been established, lupus got a very bad press. Medical textbooks printed in the first half of the twentieth century spoke of it with gloom and despondency. Women — 90 per cent of sufferers are women of childbearing age — were warned against getting pregnant or going out in the sun and given a generally depressing prognosis. Sadly there are still a few medical persons who cleave to this opinion.

If you or someone you love has lupus, I am pleased to inform you that this is total, old-fashioned rubbish. Before there were refined laboratory tests to identify the condition, the only cases that were recognized were those of people who had had the disease severely and had remained untreated for many years. Now that it is usually diagnosed and treated, it emerges that many more people suffer, but quite mildly. In fact the current belief is that there are thousands of 'sleeping' lupus sufferers who go peacefully to their graves for some quite unrelated cause, unaware that they have ever had it.

Those whose condition is diagnosed cannot yet be offered a cure, but increased understanding of what goes on in the disease, combined with modern treatment, takes the bite out of lupus. The wolf may not be dying out, but it is certainly a much less threatening creature than thought to be in the past.

Nevertheless lupus is still a mysterious illness. Like its namesake, it lurks in the shadows of the forest and comes out at night to leave unexplained damage and devastation. And, like the animal in the fable wearing sheep's clothing, it is difficult to recognize and often gets mistaken for something else. We hope this book will explain some of the mysteries surrounding lupus.

Hints for the reader
You can read this book from beginning to end, or simply dip in and out, picking out what interests or concerns you. Only the first two chapters, which explain the key features of lupus, are essential to understanding the rest of the book. The chapters (4 and 5) on diagnosis are important if you think you, or someone close to you, may be a sufferer, and the chapters (6, 7 and 8) on treatment and management are important for someone already confirmed with lupus. I have tried to use cross-headings and titles that will help you find what you are in search of (or see the index), or to skip what you don't need to read.

Difficult words are explained in the text and those printed in italic type when first they appear (though not throughout the text) are also listed in the glossary at the end of the book. Some interesting information on the general story of lupus is picked out in separate boxes.

About the author
Philippa Pigache has been a journalist and writer for more than thirty years, starting on local newspapers and women's magazines, moving to national newspapers, radio and television and, more recently, becoming a freelance medical science writer. She has worked on the Sunday Times, Daily Mail and the Guardian, and for ITN and BBC science features.

She started to specialize in writing about medicine chiefly because she was married to a doctor. (Her own educational background is in modem languages and the theatre.) She has contributed to consumer health pages and journals for health professionals for twenty years and has won awards for her medical journalism and also for her fiction. She is currently the honorary secretary of the Medical Journalists' Association and editor of their journal, the MJA News.