Durga was diagnosed with Lupus Nephritis in 2011 though her symptoms were loud enough in 2009. Durga is a B Com graduate with an MBA . With further spleen involvement and complication due to lack of advanced treatment facilities, she desires to spread awareness in the suburban parts of India for early detection of the disease.
Living in the outskirts of northern Kerala, she had come across situations were she was misdiagnosed many times and had to travel miles, to be treated. Based on her experience she wants to spread the importance of nutritional and diet awareness.
Diagnosed with lupus nephritis and frequent infections with joint pains in the year 2014, she pursued Ayurvedic medicine and holds a Masters in Public Health. Her aim is to enact at the policy level so as to spread awareness and bring in structural support to the lupus warriors. As a stepping stone she has already started working on her own research titled “Quality of life of patients living with Systemic Lupus Erythematosus, a clinic -based study, Kerala, India.”
When Swapna’s fourteen years old millenial daughter was diagnosed with SLE, it was a terribly agonizing experience but it was not to the extent it should be because she had never heard of this autoimmune disorder.
Later on, as she had to deal with the fact on a daily basis, it became a challenge which she could take well emotionally as she watched Vachasamrita face the situation boldly and manage the intricate complexities pretty well.
It’s a blessing from unknown hands for sure to be part of this very difficult experience in life for, it opened a new world of sublime reality-sickness, compassion and selflessness. That the blessed lot must support the less blessed by any means became a mandatory principle. She saw her daughter actively participate in the awareness campaign for Lupus Trust formation for supporting the needy Lupus patients. She became a part of the Lupus trust to be as much of help and support unconditionally.
Every day it is still uncertainty and pain seeing her ups and downs from the dangerous sides of the disease, yet she has hope for her and all lupus patients which will manifest in the various activities and initiatives of the lupus Trust, making our life a worthy experience
Media & Communications, Support
Suzanne was 22 when she was diagnosed with Lupus nephritis in 2018, several months after suffering from many symptoms and flare-ups. She strongly champions for early detection and awareness, especially to sensitize people on how severe chronic illnesses are skewed towards women. A writer and published author with media and communications background, she strives to connect with the Lupus community of patients, caregivers and health advocates and together create powerful content.
Krishnadas is 22 years old,pursuing his law degree at the National University of Advanced Legal Studies. He strives to enable institutions of this kind to smoothly conduct their activities though legal and financial planning in order to make the lives of people better. His sister was diagnosed with Lupus in 2014, being a witness of her journey, he wishes to support similar families by giving them the strength and awareness. His interests include history, international affairs, travelling and philosophy. He hopes to find his purpose and happiness in connecting with people around him and sharing happiness.
Azhar began to show lupus symptoms in February 2015 ,the penultimate month of his electrical engineering studies. Though it proved strenuous at that crucial period, it did not stop him from acquiring an engineering degree. Later on, in August 2015 he was diagnosed with lupus nephritis.
Azhar strongly believes Psychological and emotional support is just as important as medical care for those combating this illness, that is what he strives to impart to the other fighters through this platform.
Diagnosed in 2014 May. His organ involvement include liver, spine and lungs which were severely damaged to an extent where the liver needed a transplant. With his expertise in finance, Dinesh will also be leading the Finance and accounting departments of the Trust. He was bedridden for an year and a half.
Being the sole breadwinner of his family with his wife, 2 children and his parents who solely depend on him, is what gave him the conviction about the right support playing a crucial role while battling a chronic illness. Being a father of 2, and husband to a loving wife and a son to very concerned parents, he realised the catastrophic expenditure it had on his family. Which further shattered him with the dark reality of what patients below poverty line had to face.
In light of this, his aim is to bring in cost effective treatments and quick diagnosis by spreading awareness, especially to families of Lupus patients.Being aware of the of the Ratio of male : female patients is 1:9 , his aim to connect to other Male Lupus patients by giving them the strength and confidence.
At the tender age of 15, the symptoms of Lupus was prominently hindering the daily life of Indu. Despite the struggle, including severe adverse drug reaction that challenged her life, she strived hard to achieve her dream of becoming a medical professional even though it took her 10 years. Due to delayed diagnosis for 7 years, her brain and kidney were severely affected. It’s been 19 years now, her fight still continues with an aim to help and support such patients .
She is an advocate for providing stress free education and work atmospheres for chronically ill patients.
Vachas was diagnosed with Lupus at the age of 14. A very unique case even amongst other Lupus patients due to rare serum reactions and complications, it is her rare combination of being a fighter and a learner that has enabled her to stay ahead of her. She envisages a society where people can freely discuss solutions and work with leading research companies and world where there is high employability for people with health disorders by using state of art technology and ICT in particular.
She hopes to pass on her knowledge amongst the general public while breaking stereotypes and accepted norms for chronically ill patients, with a desire to make Lupus patients self reliant and financially secure.
On a life mission to redefine normal, she wants help co fighters to find comfort and acceptance that normal isn’t weighed by a marriage or children or any such social norms that induce pressure and the feeling of isolation, rather the fulfillment of oneself
Indulekha Joseph is an advocate at Kerala High Court She has contested in the last assembly election at Poonjar Constituency as an independent candidate and secured 397 votes. During her election campaign she had made it a point to avoid sunlight by using umbrellas and choosing appropriate times for the campaign. According to her nothing is impossible for a lupie, provided they are given the courage and positive attitude.
She is a dancer and spend 45 minutes every day for exercise. She is a social worker. Adv Indulekha has a heartfelt message for other fighters,”Dear Lupie, your dreams should be allowed to fly so high. that your Lupus won’t be able to reach even close by.”
Diagnosed with Lupus Nephritis about 15 years ago, she’s been actively spreading awareness in every way possible.