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Submitted by suzi_sangi on 26 March 2019

The patient-led Lupus Trust India is creating a holistic support network for Lupus patients in India. As they prepare for awareness campaigns for World Lupus Day,  watch this space for the resources they are putting together. 

Contributed by Suzanne Sangi

Ask any Lupus patient in India how they felt right after their diagnosis, and you’re sure to hear them say “It’s the first time I heard about Lupus” or “It felt like I was the only one”. Why? Because in India, nobody talks about this autoimmune disease that can literally destroy ANY part of the body. You wouldn’t find dedicated posters about Lupus in health centres, no popular campaigns on mainstream media or on-ground activities. Yet 1 in every 1000 people in India has Lupus, out of which 90% are women.

To top it all, the financial beating that every Lupus patient and their family goes through during the first few years of treatment is outrageous, especially considering the fact that this debilitating disease is neither covered by any government health scheme nor listed as a “critical illness” under insurances.

This is the reason why Lupus patients in Kerala joined hands with their primary caregiver, leading Rheumatologist Dr. Padmanabha Shenoy, and started the first organisation dedicated to support and enrich the lives of Lupus patients in India. On October 12th 2018, on World Arthritis Day, Lupus Trust India was officially launched in Cochin. Established to create awareness about Lupus, and support patients who fall under the below poverty line (BPL), the trust facilitates treatment and rehabilitation. The trust is also committed to provide psychological, social and emotional support to individuals and families affected by Lupus.

A bit more about Lupus - the many headed hydra

The most common type of Lupus, ‘Systemic Lupus Erythematosus’, most often attacks the joints, skin, liver, kidneys, heart, lungs, blood, and brain, sometimes simultaneously! Lupus can range from mild to life-threatening and should always be treated and continuously monitored by a doctor.

These “flare ups” are often unpredictable with various symptoms thrown at a person for months together until they are diagnosed. A lot of times, you would hear about Lupus patients being admitted in the ICU due to multiple organs failing at the same time and barely making it out alive, while many have lost their lives in the battle.

And the worst part? There is no permanent cure for SLE. The goal of treatment is to relieve symptoms and protect organs by decreasing inflammation and the level of autoimmune activity in the body.

What the Lupus Trust India aims to do

Since delayed diagnosis can severely damage major organs, the Lupus Trust India is spreading as much awareness of the disease among the larger society, medical professionals and policy makers.

The most prioritised activity, besides providing immediate financial aid to Lupus patients in need, is to bring Lupus to the notice of authorities and policy makers to avail benefits for eligible patients and their dependents. These include bringing Lupus under the “BPL Health Scheme”, “Critical Illness Category” for insurance coverage, and "The Rights of Persons with Disabilities Bill - 2016”, which already available in many other countries. Another major task is to strive for the subsidization of Lupus medicines by inclusion under the “Orphan Drugs List” (medicines for rare diseases).

Awareness activities for World Lupus Day (May 10th)

As World Lupus Day approaches, The trust has started different online campaigns to create Lupus awareness in India. The first one was the #lupusfacechallenge where many patients shared their diagnosis stories and connected with one another across the country and even with Indians from abroad! 

Other activities include the ‘Put On Purple’ (POP) and the Lupus pledge campaign where people show their commitment towards spreading Lupus awareness and support for organisations that are helping Lupus patients.

Throughout the month of May, the trust would be organizing awareness programmes in different parts of India: one is scheduled to take place in Cochin on May 5th, while the first ever Lupus walk in Bangalore will take place on May 12th. Follow the Lupus Trust India page on Facebook and Instagram to be updated on all these events!

How you can help as a reader and concerned individual:

Whether you know someone who has Lupus or not, your participation in the above events would go far in creating Lupus awareness. Many who haven’t heard about Lupus before would be educated and those who are suffering from symptoms could be diagnosed and saved from further organ deterioration. Moreover, raising voices together would help Lupus patients avail financial support for better treatment and standard of living through funds and government benefits.

If you’d like to contribute, volunteer, or connect with the Lupus Trust India in any way, you can reach us here.

You can directly contribute to the fund here:

 

Read personal stories about Lupus struggles.

Suzanne's Relationship With Lupus

How Gopa Deals With The Pain Of Lupus 

 

 

 

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