Pembrokeshire Lupus Group
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  • Home
  • What is Lupus?
  • Events
  • Our Campaign & Petition
  • News & Views
  • Our Blogs
  • About
  • Contact Us

What is Lupus?

Systemic Lupus is a presently incurable illness of the immune system, a condition in which the body’s defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs. Discoid Lupus is usually a condition of the skin alone, but in a very few patients it may develop into systemic lupus.

The disease may be triggered by various means and can present itself in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis or multiple sclerosis. The cause of lupus is not positively known though research has provided evidence implicating heredity, hormones and infections including viruses. Some 50,000 may have lupus in the UK and, like most auto-immune illnesses, 90% of sufferers are female.

With its many symptoms, lupus can often be overlooked by a GP or consultant which may delay final diagnosis and a vital start to necessary treatment which can contain the disease and limit potential damage to the kidneys, heart, lungs or brain.

Those diagnosed usually remain in medical care and receive ongoing treatment. Many symptoms will have less impact but there may be side effects. Lupus can adversely affect the lives of sufferers and their families, and influence relationships with friends and business colleagues.


Triggers

Lupus can be triggered:
  • At puberty
  • After childbirth
  • Through sunlight
  • During the menopause
  • After viral infection
  • As a result of trauma
  • After a prolonged course of certain medications
One or more of the above triggers can set off the illness in people who may have susceptibility to lupus. Lupus is often triggered in people where there is existing family history of lupus and/or other immune system illnesses, such as arthritis, rheumatism, MS and others.

What are the symptoms of lupus?

Although there are many possible manifestations of lupus, those below are some of the more common. Lupus is a disease which can present many different facets, rarely do two people have exactly the same symptoms, and these can vary from just one to many.
  • Joint/muscle aches and pains
  • A permanent rash over the cheeks (the characteristic 'butterfly rash' ... and also the origin of the name 'lupus' as the rash is sometimes likened to the appearance of a wolf's face with its whiskers - but note that, like most of the many symptoms of the illness, by no means all sufferers get this rash).
  • Kidney problems
  • Extreme fatigue and weakness
  • Oral/nasal ulcers
  • Increased risk of miscarriage
  • Hair loss
  • Rashes from sunlight or other exposure to UV light
  • Depression
  • Flu like symptoms / night sweats
  • Inflammation of the tissues covering internal organs with associated chest and/or abdominal pains
  • Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Reynaud’s)
  • Haematological disorders including anaemia
  • Seizures, mental illness or other cerebral problems
  • Headaches, migraine
A person with lupus might typically have four or five of these symptoms. Some of these might recede and others develop, whilst two fairly universal symptoms appear to be extreme fatigue / weakness and joint/muscle aches and pains.

Lifestyle

The lupus patient will need to adjust to the demands of the illness and the impact of the medication. The majority will then be able to regain quality in their everyday lives, and the following ‘rules’ can help:
  • Ask for help when needed, from family, friends and health professionals
  • Offset fatigue by rest, and by pacing daily activities
  • Become well-educated about lupus
  • Avoid exposure to direct sunlight and strong fluorescent lighting
  • Try to resolve stress, depression, anger and pain
  • Develop new hobbies and skills if able and desirable
  • Be open with friends and family on lupus unpredictability and warn them that you may suffer from mood swings.
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