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Lupus: the facts

Dr Linden Ruckert reviews a worthy volume designed to give patients all they need to know, and possibly rather more

Dr Linden Ruckert reviews a worthy volume designed to give patients all they need to know, and possibly rather more

How do you explain a complex multisystem disease to a patient? How much will they have understood and recalled from their outpatient appointment? How will they answer the next question that crops up?

David Isenberg is one of our local rheumatologists and an eminent rheumatologist. The thing patients comment on is his ability to listen and explain, as well as his apparent kindness.

These would seem the right qualities for an author producing a comprehensive but slim patient book on SLE.

There is a lot of information here and it does demand - to my eyes - a certain level of ability to understand certain parts.

The initial inclusion of American Rheumatology Assoc criteria is off-putting as the terms are medical. I thought a comment saying 'don't worry - we will explain most of this later' might have softened this, or a glossary might have been useful.

Yet one can see there is a need to define what you are talking about and what might appear in the patient's cc'd GP clinic letter.

In an initial chapter it also explains the problem in making an early diagnosis which feels supportive to us GPs - all of us probably have had a patient ask why the diagnosis wasn't made earlier.

The parts that are done well refer to the different systems, and less discussed elements such as fatigue, the sense of stigma and lifestyle changes.

The more worrying aspects, such are renal damage, have boxed riders explaining that modern management means you aren't likely to die of this complication, so issues aren't skirted but framed more positively.

This distinguishes it from some other literature for patients. There is even a 'why me' chapter that cleverly uses a hand of cards analogy to explain how SLE is a multifactorial disease.

Overall this is a balanced and comprehensive book, and well-written, but it may be just the beginning of a discussion with health professionals for some patients.

Rating: 4/5

Dr Linden Ruckert


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