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Above the Clouds

World Lupus Day

What is Lupus

Disease of a 1000 faces

Systemic Lupus Erythematosus (SLE) also known as Lupus is a long-term autoimmune disease which means that the immune system, your body's defence system, produces antibodies that attack the body's own tissues, causing inflammation. 

Lupus may affect any organ including damage to the joints, skin, kidneys, blood, heart, and lungs. It's complex nature is the reason people also call it "the disease of a 1000 faces."

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Do I have Lupus?

What You Need to Know

SLE may first appear as extreme tiredness ,  feeling of discomfort or illness , fever, loss of appetite, and weight loss. Affected individuals also have joint pain, typically affecting the same joints on both sides of the body, muscle pain and weakness. Skin problems are common in SLE. A characteristic feature is a flat red rash across the cheeks called a "butterfly rash" because of its shape. The rash, often becomes more pronounced when exposed to sunlight.

Lupus is more common among women. Symptoms start showing between the age of 15-35 and early diagnosis and treatment can make an impact on this life-threatening disease.

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Causes

Our immune system makes proteins called antibodies that fight infection. For some reasons unknown - when triggered by sunlight, some infection or previous medication- in lupus, these antibodies may be misdirected attack the body's own tissues. This is more frequent in people with certain genes. 

Lupus isn't directly passed on from a parent to child.

Lupus isn't contagious and hence can not be passed even on close contact with someone suffering lupus.

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Diagnosis

The Roots

Diagnosis of lupus is made based on a physical examination and a series of tests. These tests can also be helpful in monitoring the condition after diagnosis. Visiting a specialist in Immunology and Rheumatology is essential to give you a direction on procedures that need to take place. A variety of tests are available to check how your kidney, heart, lungs and liver are working. Depending on which organs your doctor thinks may be involved, you may have x-rays, an ultrasound scan or CT scan.

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Treatment

What You Need to Know

There's no cure for lupus at present, but the condition often responds well to many different types of drugs – especially when treatment is started in the early stages of the disease. It is, however, possible to keep the disease under control.

Treatment varies depending on which part of the body is affected by Lupus. Hence it is essential to consult a doctor during all stages and follow his/her instructions.

This is a list of steps usually prescribed by a doctor to a patient suffering Lupus :-

  • Anti-inflammatory drugs - short period reduction of inflammation

  • Steroid cream and sunscreen - useful for skin rashes and prevention of further damage.

  • Antimalarials - reduce inflammation, lower cholesterol and reduce joint pain.

  • Steroid - Dosing and duration depends on seriousness of lupus.

  • Immunomodulators and Immunosuppressants - as decided by specialist doctors.

The benefits of treatment far outweigh the risk.

What about side-effects?

All drugs have some potential side-effects, and your doctor will need to balance the risk of side-effects with the need to control your symptoms. Sometimes this may mean taking additional medications to protect against the side-effects of others.

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Managing your Disease

Essential

Although drugs are important in controlling lupus, there's a lot you can do to help manage your symptoms. The following lifestyle factors will help you reduce your risk of developing the more serious complications of lupus:

  • following a healthy diet

  • the right balance of exercise and rest

  • not smoking.

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Help

What You Need to Know

In India, many young girls suffer from Lupus. Lupus is a chronic disease and requires daily medication and regular tests and hospital visits. Most of these families find it very difficult to support their children through this extremely difficult and painful disease. There are many cases of depression, self-harm and suicide. 

We need to wake up and more that understanding how lucky we are, do something about this disease that causes so much misery in the life of these human beings. More research needs to be done on finding a permanent cure. In the mean time, you as sympathetic humans who have the resources can help save lives by donating to the link given below and taking part in initiatives like Adopt a Lupus family.

Funds collected will go to the most needy patients registered at St. John's Hospital Bangalore. 

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Past Events

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Masquerade Of Lupus

World Lupus Day is celebrated at St John's Hospital every year. For the Lupus Day Celebration 2019, we had a massive turnout of over 150 patients who attended the event hosted on May 7th. Thanks to the Medical Social Workers at St. John's Hospital, most patients returned with free packets of Sunscreen Lotion, thermometers etc.

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Doctor Vineeta Shobha, Dr. Ramya J, Dr. Benzeeta Pinto and Dr. K. Chanakya

Head of Department of Immunology and Rheumatology St John's Hospital


The Department of Clinical Immunology and Rheumatology at St. John’s Medical College Hospital, Bangalore, Karnataka was carved out of Department of Medicine by Dr. Vineeta Shobha. It is the only Rheumatology Department in an academic institute in Karnataka. Professor Vineeta Shobha has trained under pioneers in Rheumatology at PGIMER Chandigarh, thereafter, she super specialized in Clinical Immunology and Rheumatology from SGPGI, Lucknow and has vast experience in treating autoimmune disorders.

The Department has three more faculty Dr. Ramya J, Dr. Benzeeta Pinto and Dr. K. Chanakya.  The faculty are well trained in premium medical institutions and capable of managing complex rheumatological diseases. Ms. Divya is a rheumatology nurse who assists the doctors in various aspects. In addition, she is always accessible to patients and lends an ear to any patient in need. The department also engages in both clinical and basic research to understand immune mediated diseases. The department has a research lab and has two research assistants and one lab nurse to facilitate research.

The team manages many musculoskeletal and autoimmune diseases such as  Rheumatoid arthritis, Spondyloarthropathy, psoriatic arthritis, gout, Systemic Lupus Erythematosus (SLE), systemic sclerosis, primary Sjogren’s syndrome, inflammatory myositis and vasculitis to name a few. The department treats/looks after more than 1,000 patients in OPD every month.  This includes both children and adults.

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Saumya Raj

Volunteer at St. John's Hospital

I came to know about this disease in 2018 when I got the opportunity to volunteer at St. John's hospital once a week. The aim was for young Lupus patients to interact with girls of a similar age. I was awe-struck with their resilience and strong character. I myself suffer from a skin ailment called eczema but after seeing their suffering, I feel so guilty about having complaint of mine. 

I am currently pursuing Grade 11 at The International School Bangalore. Over the past year I have leant so many morals from Lupus patients and they have impacted my view of the world. I hope to make as big an impact in their lives someday. Hope you decide to join me in my journey.

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