My Story: “For Years, Lupus Forced Me To Live On 3 Biscuits & 3 Glasses Of Water A Day; My Survival Was A Miracle” 

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“I was merely a child of twelve when the doctors announced that I had barely six months to live. Despite my painful tryst with Lupus disease since a tender age of four, a 12-year-old me was still unaware of the severity of my condition. The declaration from the doctors shattered my parents and my sister – my family who have always safeguarded me as their most precious treasure in the world. They finally decided to break the news to their little princess, as they anticipated a traumatic reaction from me.

However, I refused to break apart even after the most shocking revelation. I made up my mind not to waste one minute in regretting my destiny, rather fulfil all my dreams in the little time I had left. And like a true warrior, I fought my devastating disease every single day from my hospital bed – to the extent where I was miraculously cured of Lupus one day.

No one has ever become poor by giving
– Anne Frank

Today, as a strong, independent adult woman who lost a lot throughout her arduous journey, I  wish to inspire many and spread awareness about the deadly disease of Systemic Lupus Erythematosus (SLE) or commonly called Lupus.

I was four when I contracted a fever that lasted weeks, despite taking all flu medications. After that, following a thorough examination, the doctor concluded that I had Tuberculosis.

The diagnosis was proved wrong soon when I started displaying strange and dangerous symptoms. My blood pressure was fluctuating drastically while my face got covered in dark red butterfly rashes. My body temperature was way above normal and I experienced tremendous stomach ache. The doctors prescribed some common skin ointments for the time being and continuing examining the disease with more precision.

My treatment mostly continued on the basis of trial and error as no doctor in Mumbai diagnosed Lupus until I was nine. As a result, my symptoms refused to alleviate. My family was at their wit’s end.

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Finally, after being to almost every other hospital in Mumbai, it was conveyed to my parents that I was a patient of Systematic Lupus Erythematosus or Lupus. Overcoming their initial shock, they decided not to disclose it to me and continue my treatment as advised.

However, Lupus, an incurable auto-immune disorder is yet to have any effective treatment. My immune system was being self-destructed slowly, which manifested as painful symptoms like tremendous fatigue, kidney damage and pushed me slowly towards the inevitable day by day.

The only medication prescribed to me were steroids whose side effects only increased my plight. At a point, my head and face were swollen beyond recognition. A kidney biopsy was recommended for me, but my physicians ruled against an anaesthetic procedure, fearing that might lead me to a coma. I helplessly witnessed my entire biopsy with my own eyes, with unimaginable pain.

Continued sessions of chemotherapy claimed my beautiful black hair while prolonged illness made my bones fragile, making me the victim of multiple fractures within a short span of time. It was at such a juncture that the doctors disclosed the dreadful news of my remaining six months of life.

The following day, I suffered a sudden cerebral attack that left me paralytic. Fortunately, systematic treatment and therapy helped me to walk on my feet soon. When I was discharged from the hospital this time, I was still facing difficulties with extra water retention in my body, so much so that for a long time, my daily diet comprised of three Marie biscuits and only three glasses of water.

My prolonged treatment incurred heavy expenses for my family, but, nonetheless, they were extremely supportive and caring towards me, all throughout. My father had to sell our house to finance my medical bills. He quit his job and started a business at home to devote more time to me.

With relentless love and care from my family and friends, I achieved the impossible. In 2008, I was declared cured of Lupus – probably one of the very few such instances in history. The doctors dubbed me “The Miracle Child.”

Soon, I resumed my life as an ordinary teenager who appeared for board examination, but for those close to me, I was a superhero, a triumphant soldier. I started dreaming again, to grow up and become someone, one day. But, destiny had more pain in store for me.

In 2011, I lost my mother, who had consistently been my strongest pillar. My only solace was that she had seen me happy and healthy.

Seven years later, in 2018, I lost my father as well. It was an unprecedented shock for me. Now, my sister and I are the only ones to take care of each other. I cannot express in words how much she loves and cares for me.

At present, I am a successful HR professional at a corporate firm in Mumbai, while I also manage my own Numerology centre. I am a deep believer in spirituality as I have felt the divine presence in my own life. I consider myself extremely blessed and now wish to do my bit for other people.

My sister and I are creating a platform for children with Down Syndrome. Now I plan to conduct awareness campaigns to educate people about Lupus.

My prolonged illness has taken a toll on my physique. People often ridicule my obesity. So I am a staunch advocate of body positivity. I am strongly against fat-shaming and I encourage everyone to be proud of their own body.”

– Shrradha Parekh, HR Professional, Mumbai

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A Group Of Karnataka Women Pushes Alcoholic, Abusive Husbands & Social Stigma Aside, Earns Through Recycling Workshop

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At thirteen, Neela was married off to a husband much older than her. At sixteen, she became a mother, and at nineteen, she was a widow. Despite having no regular income, she was faced with the daunting task of taking care of her in-laws, her own parents and of course, her little daughter. For young Neela, life has never known a trajectory where her voice is heard and her destiny is not blamed. That was until she came under the ambit of Hosa Belaku Artisan’s Foundation and discovered a new identity for herself. The taste of financial independence was indeed delightful for her, but her zeal to work hard for a newer, better life stood at the helm of it all.

No one has ever become poor by giving – Anne Frank

Founded by Kameshwari from Bengaluru, the foundation works with distressed women in three Karnataka villages, helping them to earn their livelihood by handcrafting a wide range of decorative or daily-use household items. Like Neela, nineteen women with struggles similar or worse, have found a new lease of life at Hosa Belaku Artisan’s Foundation. Every piece of item created at Hosa Belaku is recycled from leftover fabrics, paper, dry waste or scrap metals.

Hosa Belaku – a new dawn

“I have been working in the social sector for the past two decades. Since 2013, I got associated with Belaku Trust, who was working with rural women in Karnataka,” shares Kameshwari, a former legal executive. 

“Most of these women were victims of alcohol abuse and harassment on the domestic front. Some were widowed, single mothers or differently-abled – making life all the more hard for them in a patriarchal society. Unfortunately, circumstances led Belaku Trust to close their operations in 2015. The women were left in a lurch,” she narrates.

Some of these women desperately pleaded with Kameshwari to let them sustain their only source of income and independence. Moved by their plight, Kameshwari resolved to do her best to help as many women as possible. Investing a sizeable proportion of her own savings, she launched the Hosa Belaku Artisan’s Foundation in 2017.

At present, the foundation has active workshops in three villages in the suburbs of Bengaluru, namely, Halasuru, Achalu and Kadahalli. 

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The gritty women of Hosa Belaku

At the prime of her life, Pavithra’s husband left her for another woman. Heartbroken and devastated, she was clueless about how to earn her living. The story is similar for many other women in these villagers, with careless, abusive or estranged husbands, most being alcohol addicts. The pangs of poverty would sometimes become more unbearable than the constant physical abuse by their husbands. Yet, they had no way to have some respite from the ordeal. Few women did work seasonally as agricultural labourers. The backbreaking toil in the sun would take a toll on their health, while the deplorable situation at their homes would haunt them for the rest of the year.

Empower Poor Women To Rise Out Of Poverty

Kameshwari mortgaged her jewelery for Rs 6 lakh to start Hosa Belaku Artisian's Foundation. Most of the women employed in this foundation face domestic violence in their homes. Kindly donate here : bit.ly/hosabelaku

Posted by Efforts For Good on Sunday, July 21, 2019

Society, with its primitive doctrines, only made it worse for these women. For instance, nobody was willing to marry Shivlingi because she had a facial deformity. After a point, her own brothers abandoned her as if she had become a liability.

If one visits these women now, they would be found basking in their newfound success with Hosa Belaku. But, not only the women, Hosa Belaku’s workforce comprises a 19-year-old young man as well. All his life, Yogi, who is affected by Polio, had accompanied his mother everywhere. She used to work with the foundation until she recently passed away in an accident. Yogi’s father is visually-challenged, so the entire family received a major emotional and financial setback after his mother’s sudden demise. A helpless Yogi would painstakingly drag himself from door to door in search of work. “We took him in and trained him in toy-making. Now you would find him in a corner, making beautiful toys for children,” shares a proud Kameshwari.

Sunshine, Lamp and Dawn – Illuminating lives

The women groups at the three villages are designated with three unique names and assigned with a unique task each. Kirana (Sunshine), the group at Kadahalli is involved with paper products, making notepads, bags and jewellery.

The Halsuru group Deepa (Lamp) has adopted the art of block printing. Vibrant, stylish and beautiful handbags, cushion covers, stoles and notebooks are curated with the utmost care and precision by the women.

At Ushe (Dawn), needle and thread rules. Women who were already skilled in sewing and embroidery now earn by making stuffed toys, patchwork products and embroidered fabrics.

True to their names, the groups have indeed brought new light into the lives of their employees.

Suma and Jayamma are both senior workers at Kirana who have succeeded in constructing small concrete houses for themselves, a huge step up from the dilapidated huts they spent their youth in. Another aged lady in the same group has another compelling achievement to be proud of. Bearing the taunts and trauma from her drunkard husband all her life, she has single-handedly raised a son and a daughter with proper education. Her son, who is currently an aspiring engineer, was supported with a laptop from Hosa Belaku. Honamma, a young widow from the group Deepa is treading a similar path, raising her son all on her own.

The only solace

How much gratitude these women have towards Hosa Belaku is perhaps evident from Shri’s unwavering dedication. Diabetes is taking a toll on her eyesight yet she refuses to give up and continues etching her grit on the ornate block-printed fabrics.

The reason for such gratitude is manifold. For the conscious urban consumers, Hosa Belaku is striving to save the environment with their 100%-recycled policy. But, for the workers, it is the lifeline which not only offers them economic security but also allows them a place to voice, share and resolve the problems plaguing their lives.

“They come here and find a peaceful break from their household obligations. Some still face domestic violence regularly, the workshop is an escape for them. They discuss their issues and try to find feasible solutions. It takes the load off their tired minds. The work here is a breath of fresh air for them,” Kameshwari asserts.

“We have been assisted time and again by established non-profits and retail chains across Bengaluru, who have graciously showcased and marketed products made by our artisans. We would like more people to know about Hosa Belaku and its incredible women, and respect their brilliant spirit by purchasing their crafts,” Kameshwari expresses her wish.

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Quote
It's not how much we give
but how much love we put into giving.
- Mother Theresa Quote
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