October of each year has officially been named as Lupus Awareness Month. Lupus? OK, Systemic Lupus Erythematosus or SLE, if you prefer. Still doesn't ring any bells? Well, unfortunately it probably wouldn't. It is estimated that less than 5% of the population have even heard of SLE even though about there are over 40,000 patients in the UK alone who are thought to suffer from the disease. Even the Oxford dictionary defines Lupus as an 'ulcerous disease of the skin' which is like describing Adolf Hitler as man who once caused a bit of a disturbance in Europe.

 In the USA, Lupus has the public awareness of AIDS, and a walk around the streets of New York will reveal a poster campaign on billboard and public transport that ensures that most of the population are at least familiar with the aspects of the disease. Interestingly, the reported figures of sufferers of Lupus are higher in the US than in Britain, but many Specialists feel that this is because the disease and its symptoms are often unrecognised here. The lack of knowledge and understanding of Lupus at the General Practitioner level are just one of the major worries involved in raising the collective knowledge of the disease. In fact, more people suffer from Lupus than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anaemia and cystic fibrosis combined. Lupus can be mild and affect a few organs but often it is serious and life-threatening and the disease and its related complications cause thousands to die every year. Lupus, sometimes referred to as the wolf's disease, can be extremely difficult to diagnose as the symptoms mimic other illnesses and these themselves can often evolve into other symptoms only to disappear and often return later.

 So what is it?. Well, Lupus is a chronic, autoimmune disease which causes inflammation of various parts of the body including the skin, joints, blood and kidneys. The body's normal immune system produces antibodies to fight against infection produced by bacteria and other foreign material. These viruses and foreign substances are called antigens. In Lupus, the immune system loses its ability to tell the difference between foreign substances and its own healthy cells and tissues. The body then produces more antibodies, called autoantibodies, to fight itself, in effect, believing the body to have illnesses it hasn't got. These autoantibodies combine with the antigens to produce immune complexes, these, in turn, cause inflammation, injury to live tissues and extreme pain. Medically, a Lupus sufferer can have symptoms ranging from skin rashes, severe arthritis, seizures, brain, heart, lung, renal and kidney disorders, Raynaud's syndrome (poor circulation), anaemia or leucopoenia (where the white cell blood count is dangerously low), optical and dental problems and the extreme, but sadly misunderstood, toxic fatigue.

The latter symptom can be particularly upsetting for Lupus sufferers. Everyone gets tired from time to time and thinks they have some knowledge of how drained and lifeless someone can feel when they have fatigue. But only a Lupus sufferer can explain how it feels when your arms feel so heavy that washing your hair is akin to lifting a 200lb. barbell. The Lupus patient will often be content to just drop into the nearest chair, bed or corner for a sleep often being too fatigued to even talk and explain how badly they feel. Similarly, the sufferer will often find themselves being told that 'at least they look well' making it even more difficult for people to understand the severity of the disease.

There are no real statistics that relate to Lupus induced death. It is a fact that 50% of all sufferers have kidney complications and, of those, 10% are serious but it is only recently that you might expect to see a Death Certificate citing 'Heart Attack attributable to Lupus' on it. The disease is more prevalent among women, occasionally earning the name of the 'lady killer', as the female is 10-15 times more likely to suffer than the male. There also appears to be a larger percentage spread of the disease among those of African, American Indian and Asian descent although diagnosis makes this difficult to substantiate. Case studies are notoriously difficult to support and sometimes the figures simply do not add up. For instance, the figures for Lupus prevalence in South Africa are extraordinarily small and yet it is cited as a major disease in the black township of Baragwanath. More confusingly, Doctors at London's St. Thomas' Hospital, the largest Lupus clinic in the world, now believe there is a possible link between the disease and particular neurological disorders ranging from depression through to headaches and on to psychiatric problems such as hallucinations and agoraphobia. The existing figures could be just the tip of a very large iceberg.

There is no know cause for SLE, although environmental and genetic factors are involved that may trigger the disease, and Scientists believe it may lay dormant among those genetically at risk before being triggered by infections, antibiotics, ultraviolet light, extreme stress and certain drugs. Although there is no cure some relief can be brought about by the use of steroids on suitable patients, although long term use of this drug, of course, brings about its own problems. For those who think that this is perhaps a recent medical phenomena it may be interesting to cite the case of Hugh Gaitskell, who led the Labour party opposition during Harold Macmillan's premiership. Gaitskell was confidently expected to become Prime Minister until he died of SLE in the Manor House Hospital. His successor was Harold Wilson and the Establishment at the time was so shocked at the elevation of the self styled 'Man of the People' that MI5 actually investigated whether the Russians may have poisoned Gaitskell to cause drug-induced Lupus!

So what of the Awareness week? During last years campaign, one sufferer complained to her GP when her proffered poster was removed after only one day on the surgery wall. Her Doctor's explanation for this was that the symptoms of Lupus were so diverse that he was concerned that his regular patients would be worried that they had the disease themselves! In spite of this (or may be because of) SLE needs to be raised in the consciousness of the population and, in particular, the profile of the charity Lupus UK should be elevated to the status it undoubtedly merits. With the preponderance of charity collections in recent years a vast majority of people often contribute just to those charities that they feel do the most good for the largest number of people. Certainly children's charities and other high profile causes such as Cancer, AIDS and Leukaemia come high on peoples lists. While no-one is denying that these are worthy causes, the fact is that Lupus affects a large proportion of people, both young and old, and, in the case of children, often goes undiagnosed for years until the person reaches maturity. Raising awareness is almost as important as raising money.

Don't forget, Systemic Lupus Erythematosus, hard to say harder to live with.

Lupus UK

St James House
Eastern Road
Essex RM1 3NH

Tel: (00 44) (0)1708 731251

Email: headoffice@lupusuk.org.uk

Web Site: www.lupusuk.org.uk   

The Wolf's Disease

Lupus UK 

Originally publised in 1996, but just as relevant today as the profile of Lupus is higher, with reported cases in the UK rising annually and currently estimated at well over 50,000.

Michael Jackson was perhaps the most famous Lupus suffererer and would, undoubtably, have been in pain from any number of SLE induced illnesses.