Lupus: The unknown, yet common, disease

By LISA KAAKI, LISAKAAKI@ARABNEWS.COM

The 10th Pan Arab Rheumatology Conference, taking place at the Jeddah Hilton Hotel from Jan. 16 to Jan. 19, is an opportunity to create awareness for lupus, a serious, life-altering illness, which is neither well known nor understood, yet is far more common than better known diseases such as leukemia and multiple sclerosis.

Lupus is a widespread and chronic disease that, for unknown reasons, causes the immune system to attack the body’s own tissues and organs, including the joints, kidneys, heart, lungs, brain and skin.  Lupus, an important disease for rheumatologists, is considered as a prototype of autoimmune diseases. It is associated with many auto-antibodies and the disease can affect any organ in the body. Moreover, the medications used to treat lupus may sometimes be harmful. Consequently, the management of this chronic disease is an art, trying to adequately control the disease, and at the same time, minimizing the side effects of the medications.

Professor of Rheumatology Khaled El-Hadidi is a leading specialist in lupus. Last year, he attended a meeting in Riyadh, which celebrated the establishment of the Saudi society of Rheumatology, and this month, he is co-chairing a session during this 10th Pan Arab Rheumatology Conference.  Prof. El-Hadidi acknowledges that people in the region know too little about lupus, but he believes that one should start, first, by educating the junior doctors before the public.

“The main issues facing lupus in the region are the lack of awareness of the disease amongst the public and even the doctors, which leads to a delayed or wrong diagnosis in many patients. Another issue is the chronic feature of the disease, which imposes a burden on both patients and their families. Lupus requires regular monitoring and investigations combined with frequent hospitalization and the use of expensive medications. A third important issue concerns the myths surrounding lupus in the region. A lot of people think that it is a sort of AIDS while others believe it is always fatal, and finally, some wrongly think that patients with lupus should not get married or get pregnant, subjecting young females to a lot of social problems,” explains El-Hadidi.

Lupus, one of America’s least recognized major diseases, is widespread. However, accurate knowledge about it trails decades behind many other illnesses. It is estimated that up to 1.5 million Americans suffer from some form of lupus and more than five million people are known to be affected worldwide. Ninety percent of those diagnosed with lupus are women and 80% are between the ages of 15 and 45.

Due to the lack of epidemiological studies in the region, it is difficult to determine the number of people suffering from lupus, however, according to international figures, the prevalence of lupus is 50 per 100,000.

The main problem with lupus lies in its difficult diagnosis. According to the Lupus Foundation of America, there isn’t a single laboratory test that can determine with precision whether a person is afflicted with lupus. The patient must do around five tests, which examine the status of his immune system. Yet the interpretation of the results is rendered even more difficult by the unpredictability of the disease. For example, a test may be positive one time and negative the next, depending on whether the disease is active or in remission.

Lupus symptoms include fever, fatigue, loss of appetite, rashes, hair loss, swollen glands, sensitivity to light, ulcers in the mouth or nose and chest, muscle and joint pain. Typical treatments include the use of steroids, painkillers and immunosuppressant, as well as behavior and diet changes.

If left untreated, lupus is potentially fatal. However, if it is diagnosed at an early stage, treated adequately as well as closely monitored, it is possible to live a full life with lupus.

“Lupus is a disease that has two components: a genetic predisposition component that you cannot change and an environmental component, which includes exposure to ultraviolet rays and certain drugs. This can be modifiable if you know that you are predisposed to the disease. Most cases of lupus can be treated, and the survival of lupus has doubled over the last 30 years,” concludes El-Hadidi.

 

For more information, e-mail El-Hadidi at: Khaled_elhadidi@yahoo.com

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