May 10 was designated World Lupus Day. This year was the 15th annual observation of World Lupus Day.
Persons living with lupus and the general public need to be aware of and have an in-depth understanding of the illness to reduce delays in the time from symptom onset to time of diagnosis, as well as to improve their quality of life and reduce death.
There are common myths associated with lupus, and the purpose of this article is to dispel those myths while shedding some light on the illness.
Lupus is a cancer or disease of the blood – WRONG!
Lupus is an autoimmune inflammatory disease that occurs when the immune system of the body attacks its own tissues and organs.
Inflammation resulting from this may affect various body organs, including the skin, kidneys, brain, blood cells, lungs, heart, and joints. However, lupus may affect any part of the body at any time with varying severity. Therefore, it is quite an unpredictable illness. As a result, it may affect quality of life and, at times, may be life-threatening, resulting in death.
Lupus describes a single disease entity – WRONG!
The term ‘lupus’ is generally used to describe one form of the disease. However, there are five types of lupus.
– Discoid lupus is the form where only the skin is affected. However, persons diagnosed with this type of lupus are at low risk for progressing to the systemic form of the disease.
– Systemic lupus erythematosus (SLE) is also generally referred to as lupus. This type of lupus affects adults and occurs when multiple systems of the body as mentioned above are affected, which may include the skin. This type of lupus is associated with higher risk of complications for organ failure and death. For the purposes of this article, the use of the term ‘lupus’ refers to SLE.
– Drug-induced lupus is a transient form of lupus that is caused by certain prescription medications. Drugs most commonly associated with this form of lupus are those used to treat high blood pressure and seizures and some antibiotics. This form of the illness resolves within months of discontinuation of the offensive medication.
– Neonatal lupus is the form of lupus in which newborn babies born to mothers with SLE or similar diseases develop a lupus-like illness, usually rash and, less commonly, blood and liver problems. It is often transient, however, and resolves within months of birth, except for a single life-threatening complication of this illness in which the heart is permanently affected.
– Juvenile lupus refers to the diagnosis of lupus in children up to adolescence.
Only women are affected by lupus – WRONG!
Although women are primarily affected by lupus, men can also be affected. Globally, for every man that is affected with lupus, nine women are affected. However, much higher ratios of women compared to men being affected have been described in the Caribbean, with ratios as high as 16:1.
Although fewer men are affected by lupus, the illness tends to be more severe in men.
One can only develop lupus if there is a family history of the disease – WRONG!
Most persons who are diagnosed and living with lupus often have no other family members diagnosed with the disease.
However, once there is a family history of the illness, the offspring of those affected members are 20 times more at risk for developing lupus.
Although we do not know the exact cause of lupus, we do know that in order to develop the disease, such individuals must have a genetic risk and then be exposed to an environmental trigger. The genetic risk results from the combined effect of variants in a large number of genes.
In other words, only rare cases of lupus are due to an abnormality in a single gene. Environmental triggers include the sun (and any ultraviolet light exposure). Drugs, cigarette smoking and some virus infections have been implicated.
One treatment plan fits all – WRONG!
Although all lupus patients are recommended to take anti-malarial medication as it has been shown to reduce relapses of the disease and improve survival, some lupus patients will need more medications, and others will need less. There are other common medications that are often prescribed for persons living with lupus-including steroids, anti-inflammatories, vitamin D, omega 3 and blood pressure medications.
However, lupus is an unpredictable disease with diverse symptoms and may affect any organ of the body with varying degrees of severity.
So although there are standard medications that most lupus patients are recommended to take, the treatment plan for each lupus patient is tailored specifically based on the severity of their illness, which organ is affected, and the concurrent illness(es) that the patient may have or be at risk for.
Being diagnosed with lupus means you will have a shortened life span – WRONG!
Although there is no known proven cure for lupus, significant advances have been made in the scientific understanding of the development of lupus and its treatment. As a result of this, persons diagnosed with lupus are living longer. In fact, in the 1950s, only 50 per cent of persons diagnosed with lupus would live five years after the diagnosis. Now, more than 90 per cent of persons living with lupus will live 10 years after the diagnosis.
Several factors could have contributed to the increased survival rate in patients with SLE, including improvement in the diagnosis of the patients, leading to earlier diagnoses; more intensive treatment regimens, such as the use of chemotherapy agents and anti-malarial therapy; and advances in the treatment of hypertension and kidney failure (in particular, dialysis and kidney transplantation).
To help improve the likelihood of living longer with lupus, all of those affected should see their rheumatologists at intervals as determined by them, take their prescribed medication, and avoid factors that trigger exacerbations of their illness.
All you have to do is take your medication – WRONG!
Taking your medication consistently as prescribed by your rheumatologist is an important factor in maintaining wellness with lupus. However, diet and lifestyle changes are also important to reduce flares of the disease and complications.
Lupus is associated with an increased risk for heart disease and stroke. Therefore, a heart-healthy diet and regular exercise are advised once there is a diagnosis. Other lifestyle changes such as sun avoidance, cessation of cigarette smoking and reduction of stress levels are important.
– Dr Keisha Maloney is a consultant rheumatologist in the Department of Medicine at the University of the West Indies, Mona.