Unlike other chronic diseases, there is a severe lack of awareness about lupus. Not many people realize that it is more pervasive and severe than is thought. In fact, two-thirds of the population know little to nothing about lupus.
It is estimated that between 30 to 50 per 100,000 population have lupus. In 2011, some 40,000 Filipinos are said to be suffering from the disease. Although both men and women may develop lupus, it is more predominant among women of childbearing age, usually between 15 to 44.
It’s been labeled a mysterious disease. To date, its exact cause remains unknown. There
Lack of awarenessThe fact that awareness about the disease is inadequate adds to the burden. Even among medical professionals, diagnosing has been difficult, primarily because many of its symptoms are similar to other diseases. Dr. Lyndon John Llamado, a rheumatology specialist from the University of Santo Tomas Hospital, calls it a “great mimic”.
There are no two similar lupus cases. But many of those who have been diagnosed complained of weakness and joint or muscle pain, although they initially attributed these to stress, and put off seeking medical attention. It has been established that physical, mental and emotional stress are contributing factors that could lead to SLE.
In instances where medical attention was sought, the diagnosis was of some other medical condition, usually an infection. Misdiagnosis or delayed diagnosis means putting at risk vital organs which may already be severely damaged as a result of non-treatment of the disease.
No two cases are alike
She explained that symptoms manifest themselves one at a time, never all at the same time. And because no two cases are alike, lupus is “highly individualized.”
SLE becomes more conclusive when rashes appear on the skin, particularly a butterfly-shaped rash on the face. The butterfly has become a symbol of lupus because of this. The ANA (antinuclear antibody) blood examination confirms lupus when it finds the presence of antibodies attacking the body’s healthy proteins.
Other symptoms include fever with no known cause, chest pain when breathing deeply, swelling in the legs or around the eyes, pale or purple fingers or toes, mouth ulcers and swollen glands.
A lupus patient is also very sensitive to the sun, and sunlight has been a known trigger for the disease.
Not a death sentenceWhen a person experiences any of these symptoms, they are called flares, which can either be mild or severe. Treatment is prescribed to prevent or control these flares and to reduce organ damage.
The primary target of lupus treatment is to control inflammation. Medications prescribed are either steroids or non-steroids that have to be maintained over an extended period of time. Other than reducing flares and inflammation, there are medications to boost the immune system, balance the hormones and reduce or prevent damage to joints.
If a patient is diagnosed early and given proper and aggressive treatment for lupus, the expected outcome is 90 percent survival in 10 years.
Lupus treatment helps improve a patient’s life. It is, however, expensive. The Hope for Lupus Foundation is a group organized in the Philippines not only to raise awareness for the disease but to help indigent patients diagnosed with SLE get treatment. Pioneering members include people who have been diagnosed with lupus, although belatedly, who have undergone treatment and want to share their experience.
Yes, SLE may be difficult to diagnose and there may be no cure for it, but it need not be a death sentence. Even as it is a challenge to treat, the outcomes have been positive and there is hope after lupus. MIMS
Rare autoimmune disorder
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