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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Emergency funds sent to 250 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

MyStory: “Two Months After I Joined IIT For My PhD I Was Diagnosed With TB”

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A person suffering from Tuberculosis (TB) not only battles the ‘Mycobacterium tuberculosis’ bacteria inside his lungs but also from the stigma attached to the disease. It weakens the patients in many different ways in their fight against the dreaded disease.  

My fight with TB was also filled with stigma. I joined IIT Kharagpur for my PhD in January 2015. Two months later, in March 2015, I was diagnosed with TB. I had to take sick leave from March 2015 that eventually lasted till June 2016. Initially, I did not respond well to medication. Further tests revealed that I had multidrug-resistant TB (MDR TB). This meant that the type of TB I had was resistant to two or more of the antitubercular medication I was taking.

About a year after the intensive phase of my treatment, I felt better and applied for readmission to IIT in July 2016. A prerequisite for rejoining was that my faculty members had to verify my application. With the formalities completed, I resumed my education, but I felt that something was amiss. 

My guide indicated that he did not want his work to suffer on account of my illness. I also heard from a senior colleague that my guide had said that I would spread the disease like an ‘infested animal’. I was disheartened at being subjected to this indignity by my supposed mentor.

However, my primary concern was defeating TB, so I didn’t dwell on it. Today, as I reflect on it, I realise the reasons behind the stigma were ignorance as well as fear.

Even among the educated, there are misconceptions about TB. People think all forms of TB are contagious. Others believe the patient is infectious for the entire length of the treatment. Some even believe that TB spreads through touch. This breeds the fear of contracting the illness.

As we know, people stigmatise and discriminate when they fear. I felt the impact of the stigma on two levels – in my professional life and my personal life.

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Professionally, the reluctance of my supervisor to mentor me and his discouragement affected me. I could not decide whether I should wait for the IIT authorities to tell me to leave or drop out. That decision was made for me by luck when I found out that my CSIR grant application was never processed. 

This meant that I would have to pay for my education. Given the expenditure on my treatment, this was unaffordable for me. This was the final nail in the coffin. I was forced to drop out and could not go back to completing my PhD.

What I faced was not technically illegal. I was discouraged from doing my PhD, but it was still a form of stigma. The external stigma I faced led to depression and isolation. 

Eventually, I realised I had to fight. The treatment for TB is difficult, requiring strict compliance and the management of side effects, and these demands resolve. I began motivating myself. I began following a proper diet and completing my treatment to ensure I could recover. I also turned to books as they transported me to other worlds and helped with my isolation. I also focused on reviving my old relationships.

Gradually, things improved. I could not proceed on my desired career path, but I am an educator now. I constantly realise that I have a role to play in shaping young minds. 

Workplace stigma has tangible consequences. It affects an individual’s career, financial opportunities and their right to work with dignity. So what can we do to address this stigma? 

First, we need to sensitise people by educating them about TB, and the impact stigma has on patients.

Another measure is group counselling involving the patient, the employer and the immediate supervisor. Informal versions of these sessions happen in the workplace in the context of illnesses like cancer. Why should it be any different for TB? 

The goal of this session would be to ensure that the patient is in a supportive environment. 

Finally, at a systemic level, there needs to be a workplace policy on stigma mitigation and a mechanism where the patients can anonymously register their concerns about stigma at the workplace.

A person’s career or job is often their calling and a provider of financial security. Workplace stigma creates a hostile work environment, affecting a person’s ability to do their job and their financial security. Financial insecurity and stigma make it harder for the patient to fight TB both in terms of means and motivation. Therefore, addressing stigma in the workplace is critical to patient well-being and recovery but also to their right to work with dignity.

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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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