North East Lupus Group: so it's lupus

Systemic lupus is a chronic illness of the immune system that is, for now, incurable. The body's defence mechanism starts to attack itself through an excess of antibodies in the blood, causing inflammation and damage in the joints, muscles and other organs. The word systemic means that almost any organ or system may be affected.

Discoid lupus is a condition of the skin alone, and in a very few patients it can develop into systemic lupus. Lupus may be triggered in various ways and can present in a bewildering number of forms, even mimicking other diseases such as rheumatoid arthritis or multiple sclerosis. Its causes are not known for certain, though research points to heredity, hormones and infections, including viruses.

Some 50,000 people may have lupus in the UK, and 90 per cent of them are women, mainly aged between 15 and 55. Because the symptoms are so many, lupus can be overlooked by a GP or a consultant. A delayed diagnosis delays the treatment that can contain the disease and limit damage to the kidneys, heart, lungs or brain.

Those diagnosed usually stay in medical care and receive ongoing treatment. Many symptoms have less impact over time, though treatment can bring side effects. Lupus can affect families, friendships and working relationships, and collections of personal stories show that every patient's journey is different and unpredictable.

Common symptoms include aches and pains in the joints and muscles, extreme fatigue and weakness, a permanent rash over the cheeks, rashes from sunlight, flu-like symptoms and night sweats, weight gain or loss, headaches and migraine, mouth and nose ulcers, hair loss, depression, swollen glands and anaemia or other blood disorders. Other signs are an increased risk of miscarriage, kidney problems, chest or abdominal pain from inflamed tissue around internal organs, seizures or other problems of the brain, and poor circulation that turns the tips of fingers and toes white and then blue in the cold, known as Raynaud's.

A newly diagnosed person should remember that they will not get all of these. Rarely do two people have exactly the same symptoms, and they can range from one to many. An illness this complicated has to be managed carefully by health professionals and by the patients themselves, and the second part is where a support group can help.