By Professor Hans-Jacob Haga
The department of rheumatology Haukeland Sykehus Bergen, Norway
Translated by Carole Lindsell, Lillehammer, Norway
Written by Linda Knudsen, Bergen, Norway
The fact that Lupus is almost unknown amongst many members of the medical profession, does not make the situation easier.
The intention of this information, is to make it easier for the people to understand the Lupus patient. Very few patients with a chronic disease desire pity or special attention, but they do appreciate understanding, which makes the burden of the illness easier to bear.
We do not know why the disease occurs. Owing to some unknown factors, the patients' immune system attacks different organs in the body, which results in an inflammation of these organs, followed by a gradual destruction of them, unless treatment is started promptly. All organs may be affected, most often the skin, joints, kidneys, brain, blood and nerves.
Although the cause of the disease is unknown, we know that sunlight, stress and infections trigger off the disease or make it worse.
In the fifties, around 50% of patients with Lupus died during the first five years. Today the prognosis is much better and people with Lupus can expect to live as long as healthy people. This is due to modern treatment, with different drugs, including chemotherapy.
Lupus patients who become pregnant are more likely to have a miscarriage than healthy people.
Some patients experience an intense headache during bad periods. Pain killers seldom seem to help.
All Lupus patients dread the bad periods. It is impossible to determine when the next one is going to come along and what kind of problems it will cause. Very bad episodes may lead to hospitalisation. Most Lupus patients live an intense life whilst they are well, and feel both disappointed and discouraged every time a new bad patch occurs. It is also very difficult to plan anything in advance, when one never knows whether or not one will be well enough. Owing the tiredness and depression, irritability is often the first symptom that relatives and friends register.
Restrictions on daily life, both at home and at work, can make the patient feel inferior. Restrictions often give the patient a feeling of defeat, which again increases irritability, and makes it very easy to hurt the patient=s feelings. Even completely innocent remarks may be experienced as wounding and offensive. However, during good periods, lots of Lupus patients live more intensely than healthy people, and are also better able to appreciate the small things in life.
Most just want the assurance that their family and friends understand that some periods are difficult to get through, also that they understand that irritability and less drive are an indication that something is wrong. The patient is often afraid of what may happen.
Lots of patients with Lupus isolate themselves when they don't feel well. They refuse invitations etc. However, most of them would actually like to be pulled out of their shell, so relatives and friends should not immediately accept NO for an answer, but persuade the person to come along anyway. One must of course respect the patient regarding how ill she/he may be.
E. L. E. F.
European Lupus Erythematosus Federation