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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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2,00,000 meals served
Emergency funds sent to 350 families

 

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

Goonj Is Working With 1000’s Of Volunteers & Partner NGOs To Provide Covid-19 Relief In 18 States

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With the extension of the lockdown the crisis of migrant labourers and daily wagers has just grown bigger due to uncertainty and fear of future. In the migrant colonies, slums and for people in the villages hunger and desperation is building up day by day. This is high time we step up our efforts to support our people who are in dire need of food and hygiene essentials to survive the pandemic, Covid-19.

After the India-wide lockdown, a lot of jobless migrant workers are stuck in cities with hardly any resources while many started retreating back to their villages. With the loss of livelihoods, a large number of them are now struggling to support their families.

Goonj activated its pan India teams and a pan India network of partner organizations and volunteers in urban and rural India. This network, built over the last two decades, helps them learn from the ground, reach material quickly and review and adapt strategy periodically. Intensifying this network has helped Goonj reach and start work across 17produced states/UT in the last three weeks.
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2,00,000 meals served
Emergency funds sent to 350 families

Goonj’s focus: 

Majority of the Covid-19 relief work by non profits right now is in the metros and cities but Goonj is the only non profit that is also simultaneously focusing on the people in the villages and the ones stuck on highways or somewhere.

Goonj is targeting daily wagers, migrants and other vulnerable groups, who even traditionally are left out like the disabled, sex workers, LGBTQ community.

“COVID-19 is a crisis, yes…But, it’s also an opportunity for us to build the society anew. Not ‘for’ the people…but, ‘with’ the people. And in the process, we will build ourselves too.” – Anshu Gupta, Founder-Director, Goonj.

Direct Monetary and Material Transfer

Wherever Goonj got the permission to open their centres for packing and disbursement of relief material kits, they are creating a kit consisting of 20-30 kgs material including dry rations, masks, sanitary pads and other hygiene material and reaching them to people, as per needs and as per regulations with all safety precautions. This kit will help a family survive for 30 days.

Information till 10th April 2020:

  • Distributed 15,100 ration kits reaching thousands of people
  • Reached 17,700 families
  • Supporting 12 community kitchen across India with 16,600kgs of ration
  • 77,800 food packets provided to migrant laborers and daily wagers walking on the roads across the country.
  • Provided direct financial support to 32 organisations
  • Made 42,800 cloth face masks
  • 24,900 cloth sanitary napkins produced
  • Produced 1500 litres of organic sanitiser

In Goonj’s processing centers its trained team of women are making cloth face masks and cloth sanitary pads (MY-Pads), keeping all the precautions and with the permission and cooperation of the local authorities.

In this lock-down phase if you are facing any difficulty getting sanitary pads or you are running out of stock, here’s a detailed but very simple process of making Cloth Pads at home created by Goonj. “This is how we make Goonj MY Pads.” This is how our mothers and grandmothers turned their spare cloth into pads.

This disaster, unlike any other, is unprecedented in its scale and impact and that’s why we all must do our bit with Goonj to continue its relief work for millions of people in this still unfolding long-tailed disaster.

The need is huge.. We are there.. Need You too !!

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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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