Need to spread awareness on lupus

Till last year this mother had not heard of lupus, a serious and disabling autoimmune disease. It was only when her 21-year-old daughter was diagnosed with it that she started researching it. 

Her daughter is currently undergoing treatment for Systemic Lupus Erythematosus (SLE), or lupus, at the All-India Institute of Medical Sciences (AIIMS). 

It was in August last year, two days before her birthday, that girl had high fever after which she was diagnosed with SLE. Since then it has been a long journey for the family, going from one hospital to another.

“First we thought it is just fever. But the fever only increased and her face swelled. We took her to a private doctor who said he could not diagnose the problem. So, we went to a private hospital which referred her to another hospital where we heard about the disease for the first time,” said the mother.

However, her treatment was not successful at this Hospital and it was then that she was brought to AIIMS. On Tuesday, she was at the premier institute for a follow-up.

Even though the girl appears healthy, she is not able to do much physical activity like other girls her age due to constant pain in the joints. “The treatment here is going good, but there are days when she  coughs a lot of blood. She doesn’t go out of the house much. She needs a lot of rest,” said her mother.

“When people ask about this disease, we don’t know how to explain,” she added.

Lupus arises from immunity deficiency, which damages healthy tissues. Under normal conditions, the immune system makes antibodies to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue and thus antibodies attack the latter also.

On the eve of “World Lupus Day”, doctors said that even though an estimated 5 million people worldwide have lupus, there is not much awareness about the disease, which prevents early diagnosis.
“Out of every 100 patients in AIIMS, one is suffering from lupus. But people and doctors often confuse it with TB as one of the symptoms is coughing out blood. There is no cure for lupus. But if detected early, it can be managed successfully,” said Dr Uma Kumar, the head of department of rheumatology at AIIMS.

Lupus is more common in young women between the age group of 20-40 years. Common symptoms include fever, overwhelming fatigue, painful and swollen joints, skin rashes, excessive hair fall, breathlessness, and photosensitivity. It can damage any organ like the skin or kidney.


Dr Kumar added that the disease flares up in summer as ultraviolet rays are potent inducers.

Even air pollution in some cases triggers the “aberrant immune response.” In fact, a study conducted in Brazil last year has confirmed that air pollution is an important contributory factor in lupus. This year the theme for World Lupus Day is “lupus knows no boundaries”.

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