LEARN ABOUT LUPUS

Lupus is an autoimmune disease, or type of self-allergy, whereby the patient's immune system creates antibodies which instead of protecting the body from bacteria, viruses and other foreign matter attack the person's own body tissues. This causes symptoms of extreme fitigue. joint pain, muscle aches, anaemia, general malaise, and possibly destruction of vital organs.

Lupus mainly attacks women during their child-bearing years (ages 15- 50) but men and even young children can be affected. It is estimated that 1 in 750 women suffer from lupus in the UK. With the ratio of women to men being 9: 1. Lupus is a worldwide disease more common in some races than others. The incidence in white women is 1 in 100 compared with that in black women of 1 in 250 and Asian races also have a higher tendency to lupus. Only 10% of lupus patients are male.

Although few people have heard of lupus, worldwide it is acknowledged as being more common than leukaeniia, muscular dystrophy and multiple sclerosis. which due to extensive publicity have become household names.

Lupus can present in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis, multiple sclerosis or ME. With the variety of presentations, lupus is difficult to diagnose and it can be overlooked, often for years, unless the GP or consultant is alert to its possibilities. Many a time the patient has been told 'it's all in the mind'! A further problem the patient faces is that she or he can look quite well, eg "healthy" red cheeks are often in evidence.

Lupus is neither infectious nor contagious - the cause is not known though research has provided evidence implicating heredity, hormones and infections, including viruses. The disease lies dormant in the body until some trigger from outside the body sets the process in motion.

What are the triggers?

Lupus can be triggered

• at puberty
• after childbirth
• through sunlight
• after a prolonged course of medication
• during the menopause
• after viral infection
• as a result of trauma

What are the symptoms?

Although there are many possible manifestations of lupus, those listed below are some of the more common. Lupus is a disease which can present in many different facets, rarely do two people have exactly the same symptoms, and these can vary from just one to many.

• Joint aches and pains
• Permanent rash over cheeks
• Extreme fatigue and weakness
• Increased risk of miscarriage
• Rashes from sunlight
• Recurritig flu-like symptoms and/or night sweats
• Inflammation of the tissues covering internal organs with associated chest and abdominal pain
• Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold - Raynaud's Phenomenon
• Haematological disorders including anaemia
• Seizures, mental illness or other cerebral problems
• Headaches, migraine
• Kidney problems
• Oral ulcers
• Hair loss
• Depression

The treatment of LUPUS

There is at present no cure for lupus but careful monitoring of the disease and a treatment programme with medication adjusted as appropriate enables the condition to be controlled, most patients being able to live a normal life span.

The majority of lupus patients are in the ongoing care of their rheumatologists, and other specialists may also have involvement from time to time..

Suggestions on how to cope with LUPUS

• Become well-educated about lupus.
• Rest is most essential. The fatiaue is not like the fatigue or tiredness from physical exertion. Try to prepare for the up-and down nature of the disease. Plan alternative activities, alternate time schedules. Allow time for extra rest.
• You can reduce fatioue by developing priorities and learnine, to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in short amounts of time.
• Be open with family and friends about the unpredictable pattern of lupus, and how the disease affects you.
• By "listening" to your pain as a signal, you can begin to control it.
• Find positive ways to channel such negative feelings as anger and depression.
• Try to accept the things you cannot change rather than feeling constantly frustrated and upset over situations beyond your control.
• Remember that stress, depression and pain are all closely connected and each affects the other. If you can take steps to solve any one of these problems so as to reduce the extent of the others.
• Approximately 1/3 of lupus patients are photosensitive. Avoid direct and prolonged sun exposure and ultraviolet light from artificial sources (e.g. fluorescent lights). Wear broad-brimmed hats and cover other exposed parts of the body when out of doors in sunlight and use skinblock creams.
• Although lupus doesn't directly affect the body's capacity for sexual enjoyment, the disease can cause problems. Open, honest communication is necessary to overcome this.
• If lupus has limited your hobbies and activities, find new ways to use your skills.
• Ask for help if you need it. Family nnd friends, doctors and other health care professionals together with LUPUS UK are all sources of help and support.