Hello, my name’s Dr. Peter Landsberg. I’m a Rheumatologist who works at arthritisCARE in Brisbane.
I’d like to talk briefly about a disease called Lupus.
Lupus is an auto-immune disease which can affect just about every organ in the body. By auto-immune we mean that immune cells that should be protecting us from viruses, germs, cancer cells and more, can suddenly switch on and start damaging healthy tissue.
Lupus is really hundreds of different diseases all under the one banner. Some people with Lupus will have inflamed skin. Some people with Lupus will have inflamed joints, or inflamed kidneys or inflamed lungs. Often no two people with Lupus are exactly the same. So you could have a meeting of Lupus patients and they could all look and feel different and have different experiences.
It’s a tricky disease to diagnose sometimes.
It affects all ages and all people. Again, slightly more women than men, but no-one is exempt from Lupus.
The average age to get Lupus is during the most demanding years of our life – from childhood through to our 50’s. So it affects people while they are having babies and while they are busy working hard etc.
It can be quite a mild condition and some folk with Lupus just really experience bad sunburn, while other people with Lupus can have major damage to their organs, particularly their kidneys and lungs.
It’s a complicated disease, but at the microscopic level, little hand grenades of inflammatory cells and proteins bind together and float around in the bloodstream and wherever they lodge, they tend to damage that tissue. Like little hand grenades going off in your skin or your joints, or your kidneys or whichever organ they target.
Because it is such a diverse condition, it really is a difficult disease to diagnose sometimes and we rely on some very strict criteria. There’s no one single blood test or one single X-ray that diagnoses the disease.
In fact, sometimes as a Rheumatologist I “undiagnose” the disease.
The criteria for Lupus are really based on years of experience from Rheumatologists all around the world. And part of the reason for being quite precise about the diagnosis is that it has huge implications for treatment and even things like insurance. A person tells their insurance company that they have been diagnosed with Lupus it can make it harder to get a policy etc. So we have to be very precise about diagnosing it.
The group of conditions that make up the signs we have to look out for are:
- Particular types of skin rashes
- Mouth ulcers that are very dominant – not just one or two, but dozens
- Quite marked hair loss
- Very painful joints
- A really severe arthritis
- Inflammation of the lungs or the heart and particularly the pleura and the pericardium sacs around the lungs and the heart
- Affected kidneys that can sometimes leak protein and blood
- Affected blood cells so anaemia and low white cell counts and platelets can be present
- Sometimes even affecting the brain.
So we really have to tick quite a few boxes and be quite precise.
There are blood tests that back up the diagnosis. However, one of the problems we have as a Rheumatologist is that blood tests for Lupus can be positive in healthy people and do not mean that the patient has Lupus. There is a test for antinuclear antibodies which is very commonly positive in Lupus but is also present in one in nine normal people.
So as a result, we often see patients who have had a bit of a rash and have had this blood test and their GP is understandably fearful that they have Lupus. But in some cases, we can assure patients that they don’t have Lupus – advice that comes as a great relief.
Lupus is very treatable with lifestyle considerations being very important.
Weirdly too much sunlight is actually one of the danger triggers for Lupus, so folk with Lupus have to really be careful about avoiding sunburn, wearing good sun protection and hats. Overtiredness can also make the condition worse, so getting enough sleep is important for managing Lupus. As is a healthy diet.
And then medications come into play. Medications which specifically target whichever part of the Lupus is active. So as I say, three or four people with Lupus can be on three or four different treatments depending how they are affected.
For many people, it is a relatively mild condition, but for other people it can be quite a difficult disease. So we watch people with Lupus very carefully particularly through pregnancy and having babies, monitoring closely with regular blood tests and urine tests.
When well controlled, people with Lupus are well, have babies, travel the world, but they are watched very, very carefully. Once upon a time, it was a disease with a terrible prognosis. But now we expect people with Lupus to live a normal and healthy life.