Lupus affects one in 1,000 Indians

Lupus affects one in 1,000 Indians. It is an autoimmune condition that may affect any system in our body. An autoimmune disease means that one’s own immune system, which should protect us from germs and diseases, starts attacking healthy cells in our bodies.

It involves multiple systems and has a varied spectrum of symptoms which are different in different individuals.

This year with the help of the South Indian Medical Student Association, Indian Rheumatology Association and LTI, on the occasion of World Lupus Day on May 10 and Lupus Awareness month, there will be a walkathon for the second time in Bengaluru.

The walkathon will see the presence of Dr Dharmanand, the President of IRA, Vachasamrita Saiju, co-founder of Lupus Trust India, Suzanne Sangi, the patient leader of Lupus Karnataka Support Group and other supporters.

It will take place on May 15 at Lalbagh West Gate from 8 am to 10 am.

What are the symptoms

It may range from general symptoms like lymphadenopathy, fever and repeated infections to developing specific symptoms such as arthritis, butterfly rash and ulcers.

The disease onset may be in the age group of 12-45 years affecting women or young girls more than men. A person with Lupus typically has at least four of these 11 symptoms: serositis, oral ulcers, arthritis, photosensitivity, blood disorder, renal (kidney) disorder, anti-nuclear antibodies (ANA), immunological dysfunction, neurological, malar rash, and discoid rash.

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

The patient usually approaches a general physician first and from there is guided to their primary doctor who is a rheumatologist. Rheumatologists are physicians who are experienced in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones.

Patients are expected to visit the rheumatologist from as often as once in three to six weeks to at least once in six months, with the regular blood work up and other tests advised by the treating doctor. Lupus is not a curable condition but a one that is manageable to be able to lead a near normal life.

The basic medicines used are biologics, immunosuppressants, chemotherapeutic agents such as Hydroxychloroquine, Cyclophosphomide, Rituximab, Steroids, and Mycophenolate. Side effects include nausea, headache, fatigue, decreased bone density, cataract, retinal holes, and ulcers in the stomach.

The disease increases the chances of a person contracting infections as well as the drugs used to treat it. Hence, along with the primary drugs, patients need supplements which help deal with the side-effects.

A holistic approach is the best way to tackle the symptoms and flares. Recent research has proved that following an anti-inflammatory diet or at least a clean and wholesome diet consisting of high fibers, fresh fruits and vegetables which are rich in antioxidants and nutrients keeps the disease activity in control.

Any form of exercise such as mild cardio, yoga, meditation, body weight routines on a regular basis has also improved the quality of life of many. It is a chronic condition which cripples a person not only physically but also mentally, socially, emotionally, financially and vocationally.

In India, as of now, Lupus is not listed as a ‘critical illness’ by insurance companies, nor recognised under the ‘Persons With Disabilities Act’ as it is in many countries including the US and the UK among others.

Patient support group Lupus Trust India (LTI) is a public charitable trust, established to support patients who are financially backward and fall under the below poverty line category. The Trust also facilitates their treatment and rehabilitation. It was founded by Lupus patients in Kerala and joined by affected people from all over India. They have been holding various activities on social media and in-person such as sharing patient stories, Q&A sessions with doctors, walkathons and patient group meet ups in order to provide cost-effective treatment, spread awareness about this condition, provide information about medication and lifestyle solutions.

One can visit their website at: https://www.lupustrustindia.org/