Lack of awareness, support worry lupus patients 

Imagine a state when the immune system itself attacks tissues and organs, mistaking them to be foreign bodies.

Published: 10th May 2022 06:49 AM  |   Last Updated: 10th May 2022 02:58 PM   |  A+A-

Express News Service

KOCHI: Imagine a state when the immune system itself attacks tissues and organs, mistaking them to be foreign bodies. How damaging! Systemic Lupus Erythematosus is one such chronic autoimmune disease that can affect and damage any part of the body including skin, kidneys, blood cells and brain. Tuesday marks another World Lupus Day, calling attention to the impact of the disease on people across the globe. According to the data available with the Lupus Trust of India, a public charitable trust, Kerala has around 40,000 lupus patients. Nationally, the figure is around 10 lakh.

“A lack of awareness is a major issue many affected with the disease face,” says Dr Indu Gopi, a patient and the co-founder of the Lupus Trust of India. “The patients require family members and society in general to empathise with the right knowledge and awareness.

The disease is more severe than cancer and yet we don’t get any support. The struggle starts right from a very young age, with this disease being highly unpredictable. You just have to find a way to live with it, and the excruciating pain, through treatment.” 

The World Lupus Day focuses on the need for improved patient healthcare services, increased research into the causes of and cure for lupus, and stresses on early diagnosis. “Delayed diagnosis can severely damage major organs. We have come across many cases where the delay had devastating effects on the patients and also burdened them financially. There is no permanent cure for the disease,” Dr Indu points out. 

The Trust demands the inclusion of lupus under the BPL Health Scheme, critical illness category for insurance coverage and also under the Right of Persons with Disabilities Bill, 2016. It also wants the subsidisation of medicines by including the disease under the organ drug list. “The treatment of lupus has evolved significantly from the early days. The patients’ rate of survival, for 10 years, has increased dramatically over the past several decades – from approximately 40% to more than 90%,” says Dr Sandeep Surendran, an assistant professor with the rheumatology and clinical immunology department of Amrita Hospital, Kochi. He says several different medications are used to treat lupus. “The improvement in survival is probably due to multiple factors, including early detection with more sensitive diagnostic tests and prompt treatment,” Dr Sandeep adds.

What is Systemic Lupus Erythematosus? 

It is a chronic autoimmune disease that occurs when the body’s immune system attacks its own tissues and organs. It can affect and damage any part of the body including skin, joints, blood cells, kidneys and brain. 

Cause & symptoms
The cause is not clear. Lupus symptoms are variable, and include fever, hair loss, fatigue, butterfly rash (a common facial representation of multiple disorders), changes in kidney function, and renal and nervous system involvement. The effect varies from mild to life-threatening. 

The disease is mainly treated by immunosuppression. Non-steroidal anti-inflammatory drugs, and hydorxychloroquine. Glucocorticoids are given in the initial phase for rapid control of the disease and to improve the patient’s health. The choice of second-line therapy to prevent disease flares by reducing steroids for lupus is highly individualised and is typically guided by the specific organs affected.


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