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Lupus – raising awareness of a difficult disease

Category : Journalism · by Sep 13th, 2002

Published on Discovery Channel Health, 13 September 2002

An estimated 50,000 people in the UK, 90 per cent of them women, are suffering from a complicated and disabling disease called lupus. The problem is that many of them don’t yet know they have it.

Joint pain, fatigue, skin rashes, confusion, headaches, flu-like symptoms and chest pains can all be symptoms of systemic lupus erythematosus (SLE) to give it its full title. Unfortunately, they can also be symptoms of hundreds of other problems.

Doctors and researchers at the cutting edge are still trying to understand lupus and a range of new drugs are being developed to help those already suffering from the disease.

Although there is no actual cure, it is vital that people are diagnosed as early as possible so they can be quickly treated. The charity Lupus UK has therefore designated October Lupus Awareness Month.

Self-destruction

Lupus is an autoimmune disease. The body’s immune system goes into overdrive and produces too many antibodies, making the body attack itself. This causes joints, muscles and other organs to swell up.

It also causes frequent skin rashes, often on the face, which give rise to its rather unpleasant name. The rash was thought to resemble a wolf bite, so the disease was named after the Latin name for wolf – lupus.

Untreated, lupus can be fatal because it can attack the major organs. But with increasing knowledge of the disease and careful monitoring, most sufferers can expect to live a normal lifespan in greatly improved conditions.

The disease is genetic, nearly always affects women and is usually sparked by a sudden increase in hormones – such as puberty, pregnancy and the menopause. Strong medication, sunlight and heavy stress can also trigger the illness.

One of the world’s leading authorities on lupus, Professor David Isenberg from University College London, explains why tackling the disease is so difficult.

His clinic sees an average of 30 lupus patients a week. “The first patient might be Caucasian with a history of a photosensitive rash, arthritis, mouth ulcers,” he says. “The second could be Afro-Caribbean with aggressive lupus nephritis, kidney failure, a previous history of pericarditis. The third may be Asian with severe pleuritis, a previous history of a psychotic illness and arthralgia.” He says each of these patients meets the criteria for lupus.

“We are dealing, in reality, with a group of related syndromes, and certainly not a homogeneous disease entity. This fact is often not appreciated by basic scientists who, in my experience, far too often think of SLE as a single and simple disease entity.”

Sick and tired

Prof Isenberg also makes the startling observation that most patients are less troubled by the worst aspects of the disease, which include scarring on the face, kidney failure or even death, and far more bothered by the constant tiredness that comes with lupus.

This is backed up by Joanne Forshaw, who launched the popular Lupus website www.uklupus.co.uk after she was diagnosed more than six years ago, aged just 20.

“At first I just didn’t go out, I was too tired, it was too much,” she says. “Even now I’m still not like a normal 27-year-old – I don’t go out clubbing or stay out late, I’m too tired by then.”

Joanne’s life is significantly better since she was diagnosed, but like many sufferers, there was a long delay between her getting the disease and being treated.

“The first thing I had was a giant pain in the knees,” she explains. “I went to my GP and he told me it was just a virus. But it didn’t go away, so I had a blood test and went to a rheumatologist. There, I had some more blood tests and then three or four months later, he said I had lupus – although he didn’t explain it to me.”

That wasn’t the end of it though. “For the next year, he kept changing his mind. He said the blood tests would show it and then they wouldn’t. Finally I went into hospital for hydrotherapy but they took me off my medication and the pain suddenly returned.”

Support network

The pain was so bad that Joanne was on crutches and had to be medically retired from work. Eventually she got involved in a local lupus group who told her about a doctor in Manchester who specialised in the condition.

“I went to him and he said straight away that I had lupus. It’s been so much better since then. Now, I run my own business. I still get pain and fatigue and don’t know day-to-day if I will wake up in pain but I have learnt to adjust and come to terms with it.”

Joanne started her site to help other people with the condition and because she “was sat at home all day, exhausted, with nothing to do”. She says she is holding out for new drugs or a possible cure.

She may see her wish come true. There have been major advances in treating lupus in the last decade and Prof Isenberg says there will be further significant changes over the next 10 to15 years.

He hopes new drugs, new treatments and improved assessment will all help make sufferers’ lives that much easier.

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