Create awareness on Lupus disease

Lupus is an auto-immune disease that can affect any part of the body. It does not have a certain cause and is incurable. One in 1,000 people in India suffer from Lupus and nine out 10 are women.

However, there is little awareness about this disease and most patients suffer for months or years before getting diagnosed. There are four types of Lupus:

• Discoid (affects only the skin)

• Drug induced (disappears after medication is corrected)

• Neonatal (found in babies whose mothers have Lupus)

• Systemic Lupus Erythematosus (SLE) - the most common and life-threatening one which targets various organ systems in the body.

It affects skin, blood, joints and major organs such as kidneys, heart, brain, liver and lungs. “Auto-immunity” means our body’s immune system which is supposed to protect us from germs and infections, attacks healthy tissues and causes inflammation. Patients need frequent check-ups, tests and have to be monitored life-long by rheumatologists (doctors specialised in treating Lupus).

“May 10 is marked as World Lupus Day in order to raise awareness about Lupus and draw the attention of government bodies towards better healthcare services and to provide funding for research.” says Dr Chethana Dharmapalaiah, a rheumatologist in Bengaluru.

Symptoms of Lupus

The onset of Lupus happens between the ages 14 and 40. To be diagnosed with Lupus, patients should have at least four out of these 11 symptoms. Some could have more or even all of them:

• Serositis: Inflammation around the lungs, heart and abdomen, causing intense pain and palpitations.

• Oral ulcers: ulcers developed on the roof of the mouth or inside the nose.

• Arthritis: Sharp pain, stiffness, swelling and redness in the joints (shoulders, knees, ankles).

• Photosensitivity: Abnormal sensitivity to sunlight or artificial light causing skin rashes and fatigue.

• Blood disorder: Anemia (low haemoglobin levels), Thrombosis (excessive blood clotting), Vasculitis (damage to blood vessel walls).

• Renal/Kidney disorder: Kidneys are unable to filter blood leading to high toxicity, water retention causing swelling in the face and legs. There are 5 stages of damage, and may require kidney transplant.

• Anti Nuclear Antibodies (ANA): Blood test to check for autoimmune activity. 95% of people with lupus test positive for ANA.

• Immunological dysfunction: The anti-double stranded DNA (anti-dsDNA) tests for SLE specific diagnosis.

• Neurological: Cognitive dysfunction (memory loss, confusion), psychological problems (depression, anxiety) etc.

• Malar rash: Red or purplish facial rash with a “butterfly” pattern spread across the cheeks and bridge of the nose.

• Discoid Rash: Scarring on the face, ears, and scalp.

Other symptoms: Intense fatigue/tiredness, breathlessness, gastrointestinal problems (low appetite, vomiting), nausea and headaches, tremors/shaking, Myalgia (extreme muscle soreness and aches), hair loss, teeth pain.

Patients are treated with steroids, chemotherapy for severe organ damage, immune-suppression and anti-malarial drugs. All these medicines have many side effects which cause secondary illnesses. Following a diet with anti-inflammatory foods and doing mild exercise for few minutes every day can significantly improve their health. Patients also have to be very careful about catching infections due to their medication which suppresses their immunity.

Frequent check-ups, expensive treatment procedures and medicines can give huge financial blows to patients, most of whom can’t continue working or studying due the pain and fatigue.

Moreover, this leads to mental and emotional breakdowns which seriously hamper the social life of Lupus patients. To lead a better quality of life, patients need huge support from family, friends and work circles.

The Lupus Trust India was founded last year by Lupus patients themselves to help patients who fall under BPL category. It is the first and only organisation established for Lupus. It advocates for better health benefits from the government and takes up awareness programmes.

The first-ever Lupus walk in Bengaluru will be conducted on May 12 (Sunday), between 9:30 and 10:30 am on Queen’s Road (Cubbon Park Metro station to Government aquarium). It is organised by Lupus patients in Karnataka in association with Lupus Trust India.

(The writer is a 23-year old Lupus patient living in Bengaluru)